The FPIES of Our Lives

The Last Month

2012-02-08T20:45:00.000-06:00

Wow, nothing like leaving you hanging!!! So sorry!! It seems like I could name every post lately "Update" because I've been awful about updating!

Kara's second set of labs turned out to be ok. She does have high antibodies so we are keeping a close eye symptoms, which is actually quite comical if you know the symptoms of hypothyroidism, Kara, and two year olds in general! We will be going back to the endocrinologist at the beginning of April for another work up to see if we can truly relax about all this thyroid business!

Kara continues to be up and down. Her moods swings are terrible but when she's happy, she's the best little girl, playing nicely, entertaining herself. Her appetite is non-existent one day and we can barely get her to drink her formula, some days all she will drink is formula, and other days we can't seem to get enough food into her. Again, typical two year old but what IS typical with her?

We did a beef trial and it seemed to go ok. We called it a pass two days ago, however she has her days where she is all over the place - lots of crying, clinginess, all out of sorts and we finally give her some motrin after not knowing what else to do, and she settles down. We know she still has some stomach pain but that slowly seems to be getting better as well. All in all, we aren't getting very far but she has been stable and not losing foods again, so that is all that matters, right?

Waiting for Results

2012-01-10T20:06:00.001-06:00

I received a call Friday morning after having Kara's additional lab work done for her tsh levels. It was from Pediatric Endocrinology at Children's and because of how low Kara's TSH level was, they wanted her in right away. Tuesday morning, the 3rd, we headed over there for yet another appointment with yet another specialist.

This appointment scared me. The doctor explained why we needed to be seen right away, when the normal waiting list is 6-8 weeks out. This was pretty serious. I answered question after question after giving another full life history of Kara, myself and our families. Thank goodness my Mom was there with me!

Did you know that sleeplessness is a sign of hyperthyroidism and other thyroid relaed diseases? And moodiness? Once she started asking the questions, I wasn't sure how to answer. Just the night before I was explaining how hot and cold Kara is with her mood! I told the doctor that she's extremely moody, but how much of it is from being "just two", how much of it is FPIES complications and her just.not.feeling.good, and what if all this really is because of her non-existant TSH? Kara's health history really complicates things! Because of her complex history, the doctor is taking things pretty seriously. We had more blood drawn to test for more labs (SERIOUSLY!) and the doctor explained that if the preliminaries came back looking ok she'd let me know the next few days and we'd have a follow up in three months. If the preliminaries came back looking more complicated, she'd call me this week and we'd go from there. It's Tuesday evening, a week later, and I have heard nothing. I have been a wreck, to say the least, about this lack of news. If the results are not what we wanted, Kara is going to have to go through another round of testing, and I don't even want to know the details of that, at this point.

Today, a week after the appointment, I finally an beginning to process things a little better, but with that, my anxiety is growing. Last week I was sad. My heart just hurt so bad for Kara. I made the comment "What are the chances that one more thing is wrong?", then realizing that we have so many different things going on, and really, what ARE the chances? Lately the odds have been against us, that's for sure!

Re-trial

2012-01-10T18:42:00.000-06:00

Well, we called it quits on chicken. It's just too difficult to do a trial when it's a battle to get Kara to eat the food. We have now moved on to our apple re-trial, a food that she is much more likely to eat.
So far there has been nothing out of the ordinary. She's has it about 3 or 4 times now. I'd like to think that if it was going to cause a problem, that we would have seen that problem by now, but we will continue with the trial for the 14 day total. She is loving having apple back in her diet. She has gotten quite sick of potato and sweet potato and doesn't seem to "yike" (like) anything lately! I just hope that apple continues to like her!

Following Up

2011-12-28T20:17:00.001-06:00

We followed up with Kara's allergist last Tuesday, which meant another trip to the cities, less than two days after getting home from there! I had called the allergist's office on Monday morning to let them know what happened over the weekend and they wanted to see her the next day, so, back we went!

I didn't have records or anything yet but the doctor and I talked about the circumstances of everything that happened. We decided to RAST test Kara for apple, due to the reaction and the hives, as well as RAST test a few other foods. I explained that I wanted her tested for corn. If Kara simply (ha!) had an IgE allergy to corn, that would explain so much! The reaction, the eosinophilic colitis, the swelling all of late summer and fall...I mean, EVERYTHING! She chose a few foods to add since we were doing blood work anyway, and then repeated the iron labs (Kara's iron saturation has been low in the past). She began asking about some other labs and what her results where from her inpatient stay. She asked about her TSH and I explained that I wasn't aware of Kara ever having that test ran, so that was added to the list as well.

We discussed future food trials and with that, Dr. Ott decided that we needed to re-trial chicken for two weeks since we were fairly certain it wasn't chicken that caused the reaction and then she wants us to re-trial the apple again. This is really scary, in case it was the apple that made her so sick, but if it wasn't, it would be a nice food to have back in her diet. I can only hope that we can recognize symptoms before they get that bad, if that's the case. After those two, it was suggested that we trial spinach. We shall see...

Dr. Ott called a few days later and let us know that Kara's TSH levels are very, very low. She called Kara's primary doctor and it was suggested that she now see an endocrinologist. Add one more specialist to the list, I suppose, but MAN, this has gotten just crazy. This does explain a lot of Kara's symptoms so I can only hope that this finding will help us out. We are waiting on hearing back on an endo appointment but for now, Kara will be going back to the clinic tomorrow for a bunch of lab work that the endocrinologist wants done before we go. Wonderful...

With the holiday celebrations behind us, we gave chicken a go tonight. Kara was so excited to have chicken with the rest of us. She took one bite and that was it. She covered her mouth with both hands if we said the word "chicken". It's hard to do a food trial when she won't eat the food! As we were cleaning up supper, she walked back to the table and took a few more bites on her own time. She's a bit stubborn that way! We are at the two hour mark and things are ok. I hope our night goes ok, chicken would be great to get back in her diet!!!

Reaction!

2011-12-21T11:15:00.000-06:00

While Brian was gone at the store getting Kara's benedryl, Kara started getting really fussy and was in obvious pain. We had made plans for some family to come down to the hotel to have pizza with us and hang out so they were on their way and I was holding Kara, rocking, on the bed waiting for Brian to get back. She had a very obviously bloated tummy and I was getting really nervous. She finally had a full diaper of nasty, rotten diarrhea. It amazed me at how much and how sick it was making her. I was just finishing cleaning up when Brian walked back to the room. He called the front desk for air freshener, a clean bed sheet and comforter, and extra garbage bags. After this is all a little bit of a blur, other than knowing that something wasn't right. Brian's brother and his family got to the hotel and we went downstairs to wait for our pizza. Kara was snuggling on my lap and started getting really urpy. I thought for sure she was going to throw up so Brian helped me up to the room to get settled with her while Brenna stayed with Jon and Laura. Up at the room Kara continued to have diarrhea, over and over again. I called Brian and told him that she was really sick, if we were in our hometown that I would have had her in the ER already and that I had NONE of her records. They all came back upstairs, got ready to go and we started making plans. Luckily Brian has an Aunt and Uncle that live only minutes away from we were staying so his Aunt came and picked Brenna up and we packed a bag for Kara. At this point, Kara was nearly in shock, not really with it, at all, just SICK. I was waiting in the lobby for Brian to get Brenna settled in the car and Kara had another diarrhea episode, all through her onsie, pants, everything. I had her wrapped in a big blanket, didn't bother with shoes or a jacket, so luckily I was able to just re-wrap her in that. we hopped in the car, I held her in the back seat to try and keep her awake. We got to the ER and rushed in.

The nurse took us back and triaged us immediately. It was crazy busy in the ER at Children's that night. She said to take a seat and within a matter of minutes we were back in the room with the nurse, and the doctor in immediately after. Everything happened so quickly. The doctor came in, asked what our usual treatment is for these reactions and with that, the decision was made to be admitted and the nurse was back in starting the IV. Kara continued to have diaper after diaper in the ER. I had never seen anything like it. Not too long after the fluids were started, her tummy started to slow down a little bit and she was able to rest. We waited in the ER for what seemed like forever (probably because I just wanted to get up to a bed and get some rest!) and then were finally wheeled up to the room. They explained they were busier than they had been all year that night!

We got up to the room and the nurse did our admission and explained the process. Kara still needed to have an abdominal x-ray but they were hoping to be able to have it done with the portable up in the room. The resident would be in to do her admission and then the pediatrician would come in when she got a chance after that. I was told in the ER by the doctor that I would really like the pediatrician and that she thought I'd find that we really had a lot in common. I wondered what she meant by that as I snuggled Kara!

The resident came in and had a million questions for my tired brain to try and answer. I then had a million questions for her. I would start with "this is probably a question for the GI team tomorrow, but..." and she amazed me by being able to answer nearly every one of my questions! She finished things up saying that the doctor would be in at some point and apologized for how busy they were that night!

We finished up the admission with the RN, had Kara's x-ray done (in the room!) and she slept through everything. As we were finishing up, another person came in the room, introducing herself as the Pediatric Hospitalist. She apologized for being so late and that she had been trying to get in there all night, sicne she found out the reason we were being admitted. She pulled the chair right up to me in the bed and said "I know exactly what you are going through. My eleven year old son is on Elecare. I've been through all of this and know what it's like!" I was SHOCKED. She said her resident on that day was thisclose to graduating and being a doctor and she was lucky to have her that night because she was so good. Being that the resident and I got everything nearly cleared up, this gave the Pediatrician and I some time to talk. I can't even explain how good it felt to talk to a DOCTOR who knows what we go through! She was my life saver that night. She said she wished she was on for the entire weekend because she considered Kara "hers" and wished us the absolute best.

Kara and I slept until about 8:00 the next morning, since it was basically four a.m. before I fell asleep. We had a day of doctors and nurses and the GI team come in. The day pediatrician was amazing as well. He reminded me of one of my Uncles, who absolutely adores little kids! He let me know to let them know what we need, that I was running the show. She could try a bottle later on in the afternoon if she wanted to and we would see how she did throughout the day. We rested, colored pictures, played in the bed a little bit and rested some more, as well as had a little bit of company. Kara had a few more icky diapers but her tummy settled down pretty good. By Saturday evening she had taken her second bottle, drinking about half of each one. She continued to have a few minor episodes but I was fairly confident we could go home the next morning. She tends to need about 24 hours of nothing by mouth and then we seem to be able to slowly add formula and then foods again.

Sunday morning the GI doctor came in adn said she was probably ok to go home. He explained that we may see some diarrhea here and there as she continues to get better so not to be alarmed. They paged the peds team to come in and discharge us, and we were out of the hospital at 11:00. Kara was so excited to have her IV out, and get to go home and see her Brenna!

Family Fun

2011-12-20T19:09:00.000-06:00

I've been meaning to get on here and update over the last few weeks but Kara had been doing so well, that I really didn't have much to update on! No news is good news, right? We made it about three weeks with no travelling and Kara was successfully able to tolerate potato and sweet potato! We had a wonderful Thanksgiving and most recently, made a trip to the cities for a fun, family trip.

We received a gift certificate from the local Holiday Inn Express for our family down in the cities to use for a trip down there for fun when they donated water park passes to Kara's benefit. Realizing earlier last week that it expired at the end of the year, we decided that last weekend was the perfect time, before the crazy holidays start, to take this trip! We had our shopping done early, Kara had been doing great, and we were ready for a little family vacation!

We left Thursday afternoon. We got a later start because everything was taking longer than I had anticipated. We finally were able to pick the girls up from daycare and head out! We were about ten miles down the road when I realized I forgot the girls swim suits and we had to run back to the house. We turned around and not too much after that Kara threw up! She ended up fine, I figured it was from her sticking her fingers in her mouth and gagging herself. (she ALWAYS has her fingers in her mouth!!) We ran in the house and got her cleaned up and then once we were convinced she was ok, got back on the road again.

Friday we had a wonderful day. We got to the Children's Museum right as the opened and spent a few hours there. I think we all had a lot of fun there! The girls were pretty amazed at all the cool things there was for them to do! After that we decided to go to Mall of America. Both girls napped in the car during the short ride there but it was enough to rally them for the next stop! We walked around and decided to go to Nickelodeon Adventures first, to wear them out. We were checking out the ride prices and a guy stopped us offering us a ticket with 100 points on it for less than a quarter of the price so we took him up on it! Little did we know how long it would take us to use up 100 points! The girls went on ride after ride, loving all of it! We used up our tickets, finally, and decided to go back to the hotel. I think Brian and I were more tired than the girls were!

We had a great time and created lots of memories that day. We were thinking about heading to the Holidazzle Parade or just staying in and ordering pizza. We were all pretty wiped out and Kara was feeling a little off and clingy but seemed ok. She barely had an aappetite all day so that was a little concerning and we were noticing her bright red cheeks, but with how sensitive her skin is, it doesn't take much to flare it up. We got back to the hotel and our sleepy girl was pretty lethargic. We laid her down on the bed to change her diaper and I noticed that her eczema looked awful. I had no bendryl with me (will I EVER learn???) and set her up to watch Caillou on the computer while Brian went to find a Walgreens to pick up some Benedryl. Little did we know what the rest of the night was going to bring!

Two Years Ago

2011-11-19T16:04:00.000-06:00

We will be heading up to work the fire departments turkey bingo very soon and it's this day that once again, is bringing me back to day one of our FPIES journey. Sadly, not much has changed and we've actually gone backwards from where we were a year ago but Kara has been happy today, absolutely full of spunk and energy and is looking better than she has in months lately! We have learned so much and continue to learn more with each day about what is going on with her body. Sometimes its one day at a time but thankfully, she is thriving.

Please read last years post to see the first reaction and where we were at both one and two years ago. Today is bittersweet.

Potatoes!

2011-11-19T15:57:00.000-06:00

Kara has a food! We continued our food trial for a good 16-17 days until we felt comfortable saying it was a pass. She loves potatoes and they seemed to love her too! She does have tummy pain here and there but I believe that is related to the eosinophilc colitis, simply causing her pain because everything that comes out of her is consistent with her baseline! :)

The other night we were ready to start something else, as Kara was getting pretty tired of potato every single day. I had some pureed sweet potatoes in the house so we went ahead with those as our next food trial. She's loving them and we are on day four of them and so far, they seem to be agreeing. My thought process as the what food to try next went from one food to the next, with no real rhyme or reason and sweet potatoes wasn't even one I was considering. I'm not real sure what happened, in a weak moment, I just decided we should go for it! I watched the clock that night like a hawk. Each little burp and fuss I questioned but Kara slept through the night that night! We'll do at least 14 days of this trial as well, which is good - hopefully I'll have done a little more prepping in the "what shall we try next" list!

Biopsies

2011-11-19T15:39:00.000-06:00

Last week, while down at Mayo, I received the much anticipated phone call from Kara's Children's GI Doctor. The news we received has pretty much left me at a loss of words on so many levels.

We found out that Kara's esophagus showed mild, but chonic esophagitis, consistent with that of reflux. The plan for this? A trial of preferably Prilosec, but Zantac would be ok too. I discussed how we'd trialed Prilosec in the past but Kara didn't seem to tolerate it very well. I said, at the time, that I was ok with trialing it again since we have both at home in the cabinet. Since then, I chickened out, and we are doing Zantac. At least until we can get in and see the doctor and discuss all of these findings and a plan for the upcoming months.

The middle parts of the scope were clear, in fact, looked great. It was the bottom half, the results of the sigmoidoscopy, that has put me in this pretty much silence as I try and process what has happened in the past, where we are at presently, and what is to come in the future. Kara's biopsies show Eosinophilic Colitis. I can't get a good handle on what this means, however, this is what we were supposed to be RULING OUT. This is exactly what I had in mind all those months when I begged and pleaded with the doctors at the U of MN to please scope my child so we can rule out every possibility of why she was having so much pain. All those months, they neglected to listen to me, neglected to take me seriously, neglected to take care of my child, other than pumping her full of fluids and then sending her home.

As each day passes, I'm reading a little more about this, trying to understand it. On Monday sometime, her GI doctor will be calling me to hopefully help me with these results a little further. Kara also has an appointment with the GI Nurse Practitioner on Wednesday so we will further develop a plan. Until then, we are just taking things day by day trying to get a handle on these newest findings.

Mayo GI

2011-11-11T13:20:00.000-06:00

We have been way too busy the past couple of weeks with way too much travelling. This week brought a week down at the Mayo Clinic for an additional set of eyes on Kara, since we've had so much trouble with finding a reliable GI doctor in the past. We were unsure of how our new GI team was going to be so with our family doctor, decided to keep these Mayo appointments since they were scheduled two months ago!

Monday afternoon Kara, Grandma Cindy (Brian's Mom) and I headed to Rochester, a four hour drive south of us, for the week. She had an early Tuesday morning appointment with a GI doctor and a Thursday noon appointment with allergy.

Tuesday morning, we arrived at GI and I was very impressed with Dr. Grothe, who understood exactly why we were there and had the same questions I did as far as why the U of MN did things the way they did and why they failed to scope Kara despite months of her being in pain, having symptoms, and us basically begging them to, along with our allergist. I let Dr. Grothe know that we had very recent luck in finding a new GI team, and she was just recently scoped, yet we didnt' have biopsy results back yet. It was very relieving to know that Dr. Grothe was on the same page as we were, as far as wondering what the heck was going on in the thinking of the care we received at the U, and that she would have done things the same as Children's (New GI team) had done. We heard basically the same things that we already knew, Kara is growing and doing ok on the formula, and unfortunately, there is not much else we can do right now, but she was very interested in hearing how the biopsy results came out. She gave me her email and requested I email her the results as well as let her know if we had any questions.

We got our foot in the door, so if Kara needs additional care, from what Children's can give us, we will have Dr. Grothe available, which is a relief, despite it being so far away. It is still closer than Cincinnati is, and we are still on a stand still with them, waiting to see if we need to go or not. I was trying to stay positive that Kara's scope LOOKED ok, from the human eye but reminding myself that the biopsies will be the true test of what we have to come.

The Scope

2011-11-11T13:10:00.000-06:00

Last Thursday Brian, Kara and I headed to Minneapolis to prepare for Kara's EGD and Sigmoidoscopy the next day at Children's Hospital. Her procedure was scheduled for 12:15 with a 10:45 arrival time which meant no formula from 4:45 on. We figured it was going to be a long mornng, which it was.

Kara woke up at 3:30 for a bottle which is about her usual time, then went back to sleep. When she awoke for the day, around 8:00, she was not a happy camper about not getting anything to drink! We fought this battle pretty continuous until they took her back for her procedure!

We arrived at Children's and were visited by many members of the surgical team. With each person, we discussed Kara's past anesthesia history to make sure everyone was aware. We signed paperwork to have additional records faxed over before the procedure and spoke at length with the GI, Anesthesiologist Nurse Anesthesist. The plan was to do the procedure with as little meds as possible since we are still unsure of what caused her scary cardiac reactions last year.

Kara ended up napping and woke up right before they were ready to take her back. I was able to carry her back to the OR again and hold her in my arms as they put the mask on her to put her to sleep. She wasn't happy and was fighting it with screaming, which only makes the medicine work better! Within seconds, she was sound asleep and I was on my way back to wait. Thirty minutes later, Dr. Aru met with us to let us know that our girl is just as cute on the inside as she is on the out! He said her insides looked good, meaning there was no visible inflammation but final results would be pending the biopsies. He explained how difficult FPIES is but again, we are doing everything we can possibly do for Kara right now, despite how frustrating the process is right now.

Kara's heart behaved itself with her pulse not rising above 150. Quite the acheivement, considering after her first scope she was in the 200's while sleeping! I rocked her and tried to console her, watching those monitors like a hawk, but she continued to do just fine, impressing everyone. The recovery went well and despite thinking we were going to have at least a one, if not two day stay after the procedure, we were on our way home at 3:00!!! We were told we'd be called later in the week with the biopsy results.

The Benefit

2011-11-08T13:42:00.000-06:00

Saturday, October 29th, some of the most amazing friends and family we could ask for held a benefit for Kara and our family. The response received surpassed all expectations as our small communities came together in support. With the help and direction of two wonderful women, our fire department, which Brian is a seven year member of, and auxilliary, this event included a silent auction, bake sale, raffle, and spaghetti dinner.

The funds we received from this benefit have taken a huge weight off of our shoulders as we are able to pay off the last two years of maxing deductibles and out of pockets, traveling expenses since Kara's specialists are all two and a half hours away, and covering daily expenses since my days home with her seem to be increasing more and more lately!

The timing of this event was wonderful as Kara went back on her elemental diet and failed her first food re-trial. What we have in our small, wonderful community is more support than we ever could have asked for.

On the News!

2011-10-30T22:10:00.000-05:00

On our way home from the cities on Thursday, I received a text from Lori, one of the gals who was coordinating Kara's benefit. "Call Shane with Lakeland News..."

Holy crap. News? We had an amazing crew putting together a benefit for Kara that was on Saturday. More on that in another post, or two. It's processing in my mind still, the wonderful support we received over the weekend. Anyway, back to the news.

We waited and waited for the girls to calm down, settle in and fall asleep before I got on the phone to call Shane. Of course, the girls were boycotting falling asleep. Go figure. I finally was able to get on the phone and he asked if he could come and interview our family about Kara and the benefit the next day. Yep, absolutely! Yep, we'll see you at 11:00!

They were at our house for a while and there were parts of the interview that I mastered and parts that I really stumbled on. Of course, it seems the parts they played of me talking are the two parts that I struggled with. Go figure! Anyway, we made our few minutes of fame! Here's a link to the segment, but keep in mind, this is a local public broadcasting station! :) Kara Nelson Benefit (I'm being an awful critic of myself, but Kara was adorable and that's all that matters!!! I need some R&R!)

Scope Update

2011-10-30T21:47:00.000-05:00

Friday morning Abby called me. She realized that they had scheduled Kara at the outpatient surgery center in Minnetonka for her scope and because of Kara's history, she'd need to be scoped in the hospital and need to be kept over for observation. She was able to speak with Dr. Aru, who is actually going to be on hospital service this week, and he said he'd put her into the schedule. This actually works out great because he will be the doctor that will be following then, when she is there after the scope. She let me know that we wouldn't be able to meet him until the day of the scope, but that he'd be calling me later that day when he was done in surgery to further discuss.

Wow. In the last six months at the U we got nothing but the runaround and in one appointment with the new GI, we get what Kara needed, what the Allergist had been wanting, and it's goign to be done in under a week from the first appointment. Simply amazing.

Dr. Aru called around 5:00 on Friday. We spoke briefly about what's currently going on with Kara. He gave us the OK to start our next food, potato, if we wanted, but that was perfectly fine if we wanted to wait, too. It really didn't matter either way. He said scheduling will be calling us Monday morning and she will most likely be scoped Wednesday or Thursday morning.

Another busy week awaits us but as long as we have progress, I'll take it! :)

Allergy and GI

2011-10-30T21:13:00.000-05:00

Monday morning I called MN Gastro, the group that the new GI is through. I was able to talk to the Nurse Coordinator, who was wonderful. She had notes that the Dr. had written on Kara and let us know that they were able to get Kara in to see their Nurse Practitioner on Thursday of last week or one of the other GI's the next day. I let her know that I wanted to go with Dr. Ott's suggestion on Dr. Aru and after discussing Kara's care and their processes, agreed to have Kara see Abby, their Nurse Practitioner. In this phone conversation I was able to go through with the nurse, what our experience had been with the U and was able to ask her what their processes are with care. Everything from this conversation made things sound very promising and gave me hope.

Kara saw Dr. M, her primary doctor, on Wednesday for labs, a height and weight check, and just a general check in of how the last few weeks have been going. Kara was SOOOOO excited to see Dr. M, squealing and ran right to her when she walked into the room. She sat right with her on the chair during the appointment! Kara's weight has dropped just slightly, which wasn't all that surprising since she's only been on formula. She went from 26.4 pounds to 26 pounds even. She is 32 3/4 inches tall. That's 22% for weight and 13% for height at almost 2 1/2 years old. She's hanging in there, having gained a little on the height curve and dropped a little on the weight curve but for the most part she's been maintaining her own little curve on the growth chart and that's all we can ask for at this point.

Dr. M. mentioned her paleness right away. I let her know that Kara actually looked pretty good that day, as she had pink in her cheeks but was still very puffy. We discussed labs, since Kara's had some off iron labs in the past and agreed that those would be run. She also had some additional labs done to check other levels that might give us an idea on some nutrition issues.

We headed to Minneapolis Wednesday night, as Kara had an 8:30 appointment with Dr. Ott the next day. I had made this appointment to follow up with Dr. Ott following Kara's reaction the week before and also as a prep to our new GI appointment. As usual, Dr. Ott impressed us, spending lots of time with us, encouraging us that we will get help and will get this figured out. Kara has some upcoming appointments scheduled at Mayo in a week now, and I let her know this. We have both a GI and Allergy appointment so I wanted her to know that, as they Ave been on the calendar for over two months now! I let her know that I don't think we need allergy, as we have her on our team and she's been amazing. She asked who we are seeing, let us know that that doctor is a colleague of hers and that she would love for us to see her and to see what her take is on Kara, to see if she has any additional ideas regarding her care. She strongly suggested we keep both of these appointments since we already had them made. She checked over Kara's labs, which surprisingly came back pretty good, with the exception of her liver function tests. She's said she'd let GI handle that, since she wasn't quite sure what to think since they were elevated. With that, we left, knowing that we have her and her office's full support in Kara's care.

We headed to St. Paul for Kara's appointment with Abby at MN Gastro. We gave a full history and I had very brief notes about Kara's history from her first food fail, to save us some time because these history parts of the appointment are SO time consuming and confusing! Abby came in to the room and Kara was so welcoming, liking her from the beginning. She reviewed Dr. Ott's notes and we basically pleaded to her that we needed them to help us, explaining how things have gone at the U. She basically said "Dr. Ott wants a scope? Then we'll scope her!" Dr. Ott, at this point, feels that we could be completely missing something digestively that we are blaming on food. Since Kara had corn safe for so long, or so we thought, and upon re-introduction, failed it, we are all completely puzzled at this situation. Abby wasn't too sure either, but made it sound very promising that they would get to the bottom of it, and if they couldn't figure it out after exhausting their efforts, they'd send us to Cincinnati in a heartbeat, but at this point, there's no sense to go there when there is so much we can rule out here first. (THANK YOU.) I'm still so confused at what the deal is/was with the U and really feel like they were just done, had no interest, therefor did nothing to go out of their way to help us. It sucks, and we essentially wasted A LOT of time, energy, and emotion trying to get through this with them.

We left this appointment with a scope scheduled, two weeks away with an appointment the day before meeting the doctor. I was perfectly satisfied with the way this appointment went, and breathed a great sigh of relief, a weight of 10,000 pounds finally lifted off my chest. Abby said she'd be in touch after speaking with Dr. Aru on Monday with further instruction, as far as whether or not we could begin food trials again, or to wait for the scope.

Losing Hope

2011-10-22T16:19:00.000-05:00

On Wednesday I left a message for Kara's doctor to call me. Kara is looking very pale (had somewhat concerning iron levels a few months ago that we were going to keep an eye on) and with all that had gone on I thought it would be important for Kara to be seen by her. It had been a while. Not to mention, we are in need of a weight and height check, a flu shot, and a few other things that need to be taken care of. Her doctor was out of the office for the rest of the week and her schedule for next week is booked solid. Her nurse assured me she would talk to her on Monday and they would do everything they can to get Kara in. Dr. M is the only one who has seen Kara in a long time and we need her, not starting our story over with someone new. I'm holding onto hope that we can get her in soon.

On Thursday afternoon I left a message with the nurse from Cincinnati letting her know that I was beginning to wonder if Kara was going to be reacting to corn. I heard nothing back and called right away Friday morning to let her know that yes, Kara was for sure reacting to the corn. You know, just in case they could by some chance get her in Monday morning, we would fly out Sunday. I was prepared for anything. They want to see her reacting? Now was the time! As I said in my previous post, yesterday, Friday, came and went and I heard nothing back from them. I am beyond disappointed and have given up hope in them.

I called Kara's allergy office on Thursday letting them know that I was wondering if Kara was starting to have problems with the corn, after having her first large slime diaper, going from baseline to that - no middle ground. Her allergist simply said that one episode isn't concerning to her at this point but to keep them updated and of course, to watch for blood in her stool. I called them right away Friday morning when we woke up to let them know the details of our night and how she was definitely reacting to the corn. She spoke with the doctor and her info was that she wants us to either contact GI and let them know, knowing what a pain in the butt the U of MN is, or we can see what we can do about getting in to the other GI group they recommended. I asked let them know what? "I'm not sure, I guess. I know your trouble with GI. You know what? I'm going to just have Dr. Ott call you, that will be a lot easier." Dr Ott called me a short time later and said to tell GI simply this: You put us on this plan, two week food trials after four weeks of an elemental diet. We did what you wanted, and it's not working. What's next?" I hung up and promptly called and left a message on the nurse coordinator's (UGH!) voicemail. In that message I let her know that Dr. Erickson GI, had said to leave Kate, nurse, a message when we got through our foods to have Dr. E call me and then said I needed to talk to Dr. E because Kara is reacting to the first food. (pretty much clear that I didn't want the nurse, I needed the doctor...)

Dr E called as we were napping. I got up and tried to pull myself together to talk to her. Kara woke up in the middle of this conversation, having yet another nasty, full diaper. I'm trying to talk to her while changing Kara, explaining what was happening. There was nothing even sympathetic in her voice. Kara laid on the floor in front of me with her clean diaper on, fussing as we continued to talk. Dr. E said "well, then pull the corn. She's having an allergic response to it, don't feed it to her." I said "This is our FIRST food trial, corn used to be safe, everything use to be safe, we just need to figure out what is happening to my baby!" With that, Kara filled her diaper again as Dr. E said "Move on to the next food. I don't understand what the question is." I said "well, we went through a menu of four foods to try, we'd do potato next but what about what is happening now? Do I wait, do I do potato, the elemental diet again right away?" Her reply? "I think we should skip those and go to rice." GASP. RICE? REALLY? I told her absolutely not. I explained that RICE put Kara into SHOCK. She said "well what kind of rice was it? I said it was rice cereal, plain old rice cereal at five months old. She said "well, it could have been cross-contaminated with oat, or wheat and that was the problem. I would give it a try." I was livid. "Absolutely not. It doesn't matter. Rice was BAD and she had shock from oat as well." We won't be trying those for YEARS at this point. I have never, ever wanted to hang up on someone so bad in my entire life as I wanted to hang up on her at that moment. She had an attitude, and she clearly had ABSOLUTELY NO CLUE WHAT THE HELL SHE WAS TALKING ABOUT. This confirmed right there that does not know FPIES.

She kept saying "well, is there anything else?" to which I answered "Yes. You are the physician that recommended we travel to Cincinnati. We have a plan with Cincinnati to come there when Kara is reacting. They said there wasn't much sense in coming down if she's doing well on an elemental, they want to see her while she is reacting and do testing at that point." She said "That sounds like a good plan." At this point, I think I gave up all hope on this doctor, and got off the phone with her as soon as I could, making plans to call her in a few weeks after we had passed a few foods. Ha.

Dr. Ott's office called during this conversation, to which I called them right back. Dr. Ott called the other GI in the group she had recommended and was able to speak with him about Kara. He expressed interest in seeing her next week. We have gone round and round about this, not wanting to start all over but clearly we need something as our current situation is far from ideal. They will be calling hopefully right away Monday and we can head down to the cities for this appointment. I am finding it incredibly difficult to be hopeful in this, anymore. I am SO thankful that our old GI at the U of MN found Dr. Ott for us. If it weren't for her, who knows where we'd be. For Kara being a very new, and very complex patient of hers, she has worked incredibly hard for us.

The more I think of what we've gone through yesterday, the angrier I get. I hold my girl, who is hurting, and I hurt right along with her, although in a completely different way. I have my four year old begging for Mommy time because Kara is taking it all lately and my heart just hurts. I don't know what our answers are. Brian and I are trying to stay strong, stay calm, and get ourselves through this, trying to make rational decisions but at this point , who knows what is right and what is wrong? Corn was supposed to be safe. Wait, kids with FPIES are supposed to have grown out of FPIES by now, or well on their way, not reacting to everything that goes into their body!

I sure hope that something a little more positive comes out of next weeks appointments. We sure need it around here!

.

Corn FAIL

2011-10-22T13:20:00.000-05:00

I don't even know where to begin with this. In my update post the other day, I said we were watching Kara closely because she was beginning to have some symptoms of possibly not tolerating the corn, despite how positive we were that corn would be safe. I'm going to try not to go into too much detail about what events occurred, but this is related to FPIES, and FPIES is far from pretty, so consider yourself warned. :)

Wednesday afternoon Kara was looking pretty pale again. I was home sick, all week with bronchitis and my first thought was that she was catching what I had. Not long after, she was getting really fussy, complaining that her tummy hurt. Within minutes she had pooped, I went to change her diaper and it was (again, sorry, but here goes...) slime. While on Neocate, we had none of these. Perfectly, stinky, diapers, on the verge of being constipated from the elemental formula diet. Shit. Literally, my heart just sunk. I walked the diaper outside to show Brian - many of you understand this! :) His response was to pull the corn. Mine was this: It was ONE episode, I was SO sure that corn was going to be safe. I said I needed to see one more diaper look like this and then I'd be convinced.

We went on with our evening and Kara did ok. She was a little fussy and we ended up being up with her until 11:30. She couldn't get comfortable and had some pretty rotten smelling gas. We got her to sleep, and the night wasn't the greatest, and enough for me to decide that I needed to be home with her on Thursday.

With no other poop symptoms besides that one diaper, we pressed on. Kara had corn pasta for lunch, and snacked on kix through the day. I was continuously asking her if her tummy hurt. "Nope!" was the reply each time. I can't remember the exact details of the rest of the day...I dont' think she had more icky diapers, but things are cloudy and I know I wasn't sure what the heck was going on.

I talked things over with a few of my closest FPIES Moms - we went through ingredient labels, different theories...maybe it was the corn pasta that she can't handle. She'd had it twice but until that point it had only been Kix or Chex. The cereal is probably a lot easier to digest, maybe that would make a difference? We talked about how once we went on the Neocate only diet, her eczema symptoms didn't get any better, and in a way seemed almost worse and how we ruled that out as being food related now. This had me right back to questioning whether or not the Neocate has been causing us problems, since it does have trace amounts of corn in it. Could it be that we were building to a reaction to corn after ALL THIS TIME???

We decided no more corn pasta and at supper she insited on something to eat so we stuck with her cereal. She was all over the place - happy, sad, mad, gassy, obviously not herself. She ended up sleeping in our bed with us so we could hopefully get some sleep.

I dont' know what time we both actually woke up, but it was clear that Kara was having some pain. She was tossing turning, crying out, and was pretty much miserable. She'd have her head on my chest, my stomach, at the end of the bed, making us crazy trying to get comfortable until she finally was able to poop. Brian went to get a diaper and wipes and Kara was a mess. We got her cleaned up and she was able to rest...for a few more minutes. The next one, we rushed to her room, as Brenna was already in our bed from the chaos of the night so far. We ended up having to do a total bed change and give a 3 a.m. bath. Kara was in so much pain. This went on, we think starting around 1:45. I think we have five diapers from then until 5:30 when we finally all started to rest camped out on the living room floor. Brenna, included. NO MORE CORN.

Yesterday we had symptoms off and on all day. The total was nine blowout, diarrhea diapers in twelve hours. We pulled the corn, and are working on what our next step is going to be. The frustrations are huge...as if we didn't have enough on our plates yesterday, I spent a good part of the day on the phone with Kara's different nurses and had a few conversations with her allergy doctor, trying to figure out what the heck we are supposed to do next. That's a post all in itself. Oh, and for the record, I called Cincinnati both Thursday night and again Friday morning and never received a call back. I'm not sure what to think about that.

The good news is, we were able to keep Kara somewhat hydrated. She doesn't look well but we will be addressing that on Monday, as long as she doesn't have any symptoms of dehydration. More later - for now, it's NAPTIME! :)

Playing in the Corn

2011-10-22T12:28:00.000-05:00

Last weekend we enjoyed a family day by going to a local corn maze, pumpkin patch and little petting zoo. The girls had a blast and we had fun some scaring them in the corn maze - just enough to get some good laughs out of them!
At the end, we let them play in the large "corn box" that they had set up full of, well, corn! Kara loves the sandbox so of course she was in heaven here. We kept talk talking about how appropriate it was, since corn was her first food trial! Little did we know the events that were going to follow in the next few days...

Of course, I forgot to bring my camera so we didn't get any pics except the ones I have on my phone, but I have to share this picture of my happy, finally food eating girl, playing in the corn...

A Late Update

2011-10-19T22:03:00.000-05:00

I totally thought I'd updated since last weeks allergy appointment, but apparently not! Once again, we had a long day at allergy but this doctor is so thorough, it's amazing! We walked out of there an hour and a half after her appointment time, with the majority of this time spent with the Allergist!

The doctor was impressed with the way Kara's skin looked and we decided she could go off the Prednisone. We discussed having some on hand in case of an extreme breakout again, we could get it started right away. She wants us to get down to using her Protopic daily and get away from the steroid creams that we've been needing. This skin stuff makes me crazy but at least her feet have been able to heal up! We were told to expect a flare as the Prednisone wears off and now, a week later, we have our flare. Poor girl! :(

Kara's interest in her nebulizer is great, when she's coughing, and lasts for about two minutes before she is done. With the time of year, we are going to more than likely need her to be on a steriod neb daily for control as well as her albuterol as needed. We were given a chamber for an inhaler, connected to a cute little ducky mask that Kara simply has to take five breaths with it up against her face, to use on a daily basis. Pretty neat! This will surely help with her having no interest in the nebulizer for the amount of time needed. It's been pretty nice because she knows that the nebs help her so when she starts coughing, often times she'll ask for one!

We went to this appointment to discuss whether or not we could begin our first food trial. It was decided that we would be ok to start with corn for the full 14 days of a trial before moving on. We talked about how we were 99% sure that corn would be perfectly safe, as she's tolerated it fine in the past, from what we remember. Our second food trial is up in the air between potato, banana or even apple.

We discussed our plan with Cincinnati, the opposite plan with the U, and my extreme (EXTREME) frustrations with how opposite they are and how I just don't feel like the U understands what they are working with. Our wonderful allergist understands exactly how we are feeling, as she's had to communicate with the U for me before because of me not getting through to them. She brought up the dreaded conversation of possibly having Kara see a GI doctor through Children's instead of the U, one who works a lot with food allergies, to which Brian and I both cringed. We have WAAYYYYYY too many options of GI doctors but NOTHING, NOTHING is promising. (Other than to fly out to Cinci, in hopes they can help and then hope to heck that Kara's GI doctor here will follow what they want us to do for her!!!) We left, I think, not even addressing this yet. We are hoping that our first few food trials go well and the GI story can stay on the back burner for a little while. :)

At the end of the appointment, we were given the OK to start corn. Kara and I had gone shopping the night before and bought some KIX for our first trial. I had some in my purse ready to start! We were walking out and I handed her the baggie. We got in the elevator and the excitement in her eyes was unforgettable. She was SO happy! I teared up as she ate them, never thinking it would be as exciting as it was.

We are now on day six of the corn trial. We have some symptoms going on that we are a little unsure of, but nothing enough to pull the food yet. We are just going to be paying very close attention to every little symptom in the next few days.

Getting Closer

2011-10-11T20:47:00.001-05:00

Last Friday, I spent a good amount of time on the phone with the nurse from Cincinnati Children's Hospital. We were basically able to do sort of a "phone consult" to update on where Kara is at now, since they had already reviewed her records. She was already aware that Kara was on a Neocate only diet for a few weeks and had made the doctor aware of this as well.

Through our conversation, we developed a plan that has given me a huge sigh of relief. Basically, since Kara has been on what's called an elemental diet for over four weeks now, scoping her is not going to be of any benefit to them to diagnose or rule out additional disorders. We are in the perfect place, being on this elemental diet because this has taught us a number of things, despite how difficult its been. We have learned that Kara's GI trouble is, in fact, caused by an allergy to foods and not due to something else. We have also, very importantly, learned that Kara's eczema and asthma is NOT food driven since she's had such bad breakouts even though she's been on the elemental diet. This is huge, as I have always associated these eczema flares as being from an offending food.

They (Cinci) tweaked our plan that we had with the U just a little bit after reviewing the records. We decided on the full two week trials, beginning with corn, and then either banana or potato for another two weeks. The first four foods we will do will be those three and then apples. I confidently told the nurse that the first three foods SHOULD be just fine, Kara should have no issues with them but after that, we are back to everything being a shot in the dark. Doing the 14 day trials, beginning with a tablespoon a day and working our way up will give us the full, big picture on how she can tolerate each one.

Because of where Kara is at right now on Neocate, we discussed whether or not we need to come right now and it was decided not to, since we have been able to do so much over the phone. We were told we could come for the consult now but we'd just have to come back again when we ran into food trouble, so as long as it isn't necessary on there end at the moment, we opted out. Once Kara starts having GI trouble again from food, which she will as we trial (unfortunately, the game is trial and error. The only way to know if she's going to react is to try...), we will let the nurse coordinator know and she will get us set up, hopefully right away, to get out there for her appointments.

It was explained that the week we go, Monday would be the GI consult date, Tuesday would be the scope, Wednesday is the appointments with the other specialists, Thursday is back with GI and the team to discuss biopsy findings and Friday is left open for anything left. I asked about the other specialists on the team. Their Allergists are Immunologists as well (the same as Kara's new GI) and other specialists are available as the team sees needed.

This plan has left me feeling very hopeful and we have a lot of very busy weeks to come with the beginning of food trials. It's been almost five weeks since Kara has had a bite of real food and about seven weeks since she's been on her old diet. We've come a long way but yet this is only the beginning.

Update

2011-10-11T20:05:00.000-05:00

We have had one moody little girl on our hands for the last week and I am blaming the medication! The good news? She looks GREAT! No more face puffiness, swelling, icky eczema, barking cough - it's a miracle drug, despite how bad it is on a persons body... The moodiness is something else though. She just doesn't feel very good, is what I gather. Many times all she wants to do is "a-a-bye with a ba-ba and watch shortcake" meaning rock, drink a bottle and watch strawberry shortcake. I can't even count how many hours we've sat in the rocker doing this in the last few weeks. I do love the snuggles, however, so I'll take it. A lot of the time, I think she is also just plain, old HUNGRY. She's been drinking a bottle about every hour lately so it's been busy! At night she usually goes from about 10:00 to 3:00 or so and then wakes again at 6:00. She is starved! We've also had quite a few 3:00 clothing and bed changes due to this enormous fluid intake!!!

Kara goes back to the doctor on Thursday. We are really hoping that we can start our first food trial on Friday so we can have three whole days home with her to watch symptoms, and that she doesn't make us wait until the Prednisone is completely gone. We are starting with corn, for two weeks, and are very sure that it will be a "safe" food, as it was in the past, so maybe she'll let us!

I'll update as soon as I get a chance after the appointment.

A Setback

2011-10-04T21:09:00.000-05:00

Kara had a really cranky, irritable night last night. I'm not sure anyone got much sleep in our house. She woke up this morning and seemed ok, so we got ready to go to work and daycare. I was tired, but hoping for the best!

I had a message this morning from Kara's allergy nurse. I swear, they somehow seem to know when we are having problems and call to check on things! Have I mentioned how amazing they are?! I told the nurse about how Kara isn't looking much better and how things went for us the night before. She said she would talk with the doctor and call me back shortly.

Around noon, our daycare gal called to let me know that Kara's cough was pretty barky sounding. I sort of panicked, as I tend to do, but was told that I didn't have to come get her, she just wanted to let me know. She said it was almost nap time so she could just put her down for a nap...No, I said, laying her down is only going to make things worse for her. I let her know I was waiting on some phone calls from her doctor, anyway, so I'd come get her so we could get a neb in her right away. I left work and went to pick Kara up. She wasn't terrible but certainly didn't look good! On the way home, I left a message for the allergy nurse to call me so I could let her know about the latest.

We got home, took a neb, had a bottle and snuggled in the recliner. Kara doesn't go too far from my side when we are together! I didn't have the heart to put her in the crib and had too much to do to snuggle her in my bed, which is our new favorite! The nurse called back shortly after. We talked about things, she told me the doctors suggestions and then ended up putting the doctor on the phone with me. We are two and a half hours away and this office respects that and doesn't want us to drive down if it's something we can take of over the phone!

Dr. Ott, Kara's allergist, explained how we cannot start food trials on Friday with how Kara has been. My heart sunk, I started shaking and wanted to cry. Forget about the anxiety with starting foods- now we are getting pushed back again! With how much inflammation Kara has going on with her airway and skin, it will be way too complicated to add anything new to her system at this time. She said to hold off at least another week. We talked about everything I've been doing with her skin, Kara's history last winter (constant nebs - pulmicort and albuterol) and the winter before (hospitalization from respiratory complications). She prescribed Kara a two week dose of Prednisone to help get this inflammation under control. We will do the slow taper off, as you do with Prednisone, and then start the Pumicort nebs right away. We discussed a small dose antibiotic to get us through the winter but I brought up my concern of her intolerance to antibiotics. She said she wants to see Kara soon, within the next two weeks so we made an appointment for the end of next week. I'm hoping we can get the food trials started after that appointment but am ready for anything at this point.

Allergies and Asthma

2011-10-04T20:20:00.000-05:00

Kara's eczema has been completely out of control. Despite the measures we've taken since our last allergy appointment in mid-September it hasn't gotten much better. With this we've seen even more of an increase in the sneezing, stuffy nose, and icky, croupy cough.

It was a beautiful fall day yesterday and we spent the late afternoon and evening outside. Brenna just learned how to ride her bike without training wheels and Kara has mastered pedaling on her trike. The girls rode in circles around the driveway. I noticed Kara getting puffier and puffier. We came in for baths and the eczema around her eyes was bright pink again. Her wrists looked like they had welts on them. I put her in the bath quick and did her full skin regime afterwards. I wanted to cry looking at the random patches all over her legs and arms. Kara did a good job covering her entire face in vaseline (!) helping Mamma while I applied her meds everywhere else. We wrapped her ankles, put jammies on and her itchy was making her crazy. Another dose of Benedryl was given - we should really buy stock in this stuff! Not too long after this, the wheezing started. She was scaring me! I'm so tired of having night after night wondering if we are going to end up in the ER! I swear it's every other day lately! We started up the nebulizer and Kara took that and fell asleep in my lap.

It's been one thing after another. These symptoms clear a lot of things up for us as far as what all was food related. Since she has always had these symptoms, we didn't know if it was food driven or not. Given the fact that she is on no food right now and hasn't been for almost four weeks now, it's clear that this is all related to something else - something in the environment that we haven't been able to figure out yet, despite the skin prick testing. Who knows if we'll ever figure it out. For now, Benedryl and Zyrtec are our friends. :)

Food Trial: Corn

2011-10-04T19:54:00.000-05:00

Yesterday I realized that after almost four long weeks we were almost to the big day of starting our first food trial again. I was brainstorming how we would do it, what we would do and had pretty much decided that Friday and through the weekend we would be giving her the little snack bowls of kix here and there, when she asked and gradually moving on to corn pasta polenta, grits, corn chex, and the other corn products we used to use. Ten to fourteen days of corn to call it a trial. I was excited and nervous. Neocate has been so safe. We have had some minor tummy problems that are usually associated with a Neocate only diet and the thought of entering the great unknown of food trials again scared me, but yet we need to get Kara back on food, after all, there aren't too many 2 1/2 year olds that are on a liquid diet!
Ready or not, here we come...or so I thought...
(to be continued...)

Neocate: Two More Weeks

2011-09-26T20:49:00.000-05:00

Kara has been on her Neocate Jr only diet for two weeks. Last Thursday was the end of the two week trial and we were to update GI at that time.

I called and ran into my usual problems with the nurse coordinator. She, at some point in the conversation, made the mention that some children have to be on Neocate for sometimes six months before they are ready for food. NO NO NO. Kara is better, her tummy is much better, she's at baseline as far as her tummy goes, and our allergist said she should be scoped before we begin food trials. I got extremely frustrated with her again (this is an every.single.conversation.occurrence with her) and finally asked to have the doctor call me so I could talk to her. The next morning I called Kara's allergy office. The staff at her new allergist's office is amazing. I explained my conversation with the nurse at GI and how frustrating it is for us and she said they would get working on contacting the U right away.

That day, after work, Kara's GI called me. We discussed the plan, and she explained that it was discussed with Allergy and that Kara is to do two more weeks of Neocate. Her gut is well on it's way to being healed but we want to keep going with this before jumping right in on foods again. We ended up going through this big long plan - we are doing a total of four weeks of formula only and then starting a trial of corn, where Kara will have corn pasta, kix, corn chex, polenta, grits and a few other corn-only foods. She will do this for 10-14 days (assuming she can tolerate it for this long) and then we will call and update GI, at the same time, scheduling a scope. After the corn trial we will do the same with a potato trial for 10-14 days and the scope will be right after that, so roughly six weeks away. We will work together on developing our food trial plan. For now we have a list that we will strictly avoid due to her dairy and peanut allergy and her FPIES reactions to soy, dairy, rice, oat, pear and green bean.

This is our plan. There are a few other things going on - we still have those Mayo appointments scheduled (which I'm holding onto for now simply because of the communication problems we seem to have with the U and needing a MN GI available despite what happens with Cinci), we have the Cinci stuff in the works, and I'll keep in close touch with Kara's Allergist to help me through all of this. I think I'm going to be leaning on her office for a lot more support in the next few weeks - they are wonderful and have really helped us in the last few weeks!

So - here we are. Here's our plan and I'm ok with it. Neocate only is tough but honestly, it's a lot easier than I thought it would be. Kara has been great with it - she seems to understand and be ok that the doctor said bottles only but when she has her meltdowns, they are pretty heartbreaking. We can do this - it's helping our girl!

Baby Steps

2011-09-26T19:48:00.000-05:00

This whole process of getting Kara in at Cincinnati Children's Hospital is moving in the tiniest little steps I've ever witnessed. We started this process well over a month ago and to date, we still don't have an appointment set.

Early last week I was informed that they finally connected with the U to get Kara's biopsy slides sent. I was notified that they were going to be Fed-Ex'd and then the next afternoon, notified again that they had been received. I had crossed my fingers and toes that they would be in the system in time for her case to be reviewed on Thursday, the reviewal day and on Thursday afternoon wrote an email asking if her case was on for that day, and if we could please have appointments set up by the end of the week so we didn't have to wait an extra week. I never received a reply.

This morning, I received an email from the pathology department letting me know they need insurance info and patient demographics before they can review the slides. Shaking my head, I emailed this info back and asked if the slides will be reviewed this week. The reply was yes, and it will take 2-3 days for this.

I am not a very patient person, I will be the first to admit this. When I want something done, I want it done now (!) and if it can't be done now, I want to know what I can do to help speed up the process. In this case, there is nothing I can do. I sent everything that I could to Cincinnati the first day that I made the initial phone call. I guess the good thing is that we have Kara's symptoms under control right now, even if she is on a Neocate-only diet. If she were crying in severe tummy pain like she was 3 weeks ago, it would be much more difficult to be patient and I would have given up on them by now, in search of another national hospital that could help. (that thought isn't entirely out of my head, either, at the snail pace we seem to be moving...)

So, we sit and wait. Another week goes by, hopefully by this Friday we'll know the date that we'll be travelling.

Cinci Update

2011-09-19T19:54:00.000-05:00

The details for our trip to Cincinnati have been sllloooowwwlllly coming together. I've been in contact with one of the coordinators 2-3 times a week and the nurse probably once a week. For as on-the-ball as things were that first day of me getting things set up there for Kara (AUGUST 18th!) the process has been ridiculously slow. The latest hang up has been getting the biopsy slides from the U of MN.

The coordinator has requested them two times with no luck. With a phone call, it was found that I need to sign a form to have them released. Email, print; sign, scan; email again. At least this could be taken care of electronically! Last Friday, the update I received via email was that she had still heard nothing. Today I received another email that they finally got it and are fed ex-ing the slides so hopefully they are there tomorrow, or at the latest, Wednesday. I'm sure it's going to be another week before we even know WHEN the heck we'll be heading out there. Pathology has to review the slides and then the nurse presents on Thursdays, from what I understand. Fingers crossed this will be ready by Thursday but I wouldn't be surprised it it was yet another week. In the meantime, we'll just keep hanging in there, doing what we do best!

Eczema

2011-09-15T21:18:00.000-05:00

We have struggled with Kara's eczema pretty much since birth. We get it under control, and have a flare again. We've used so many different creams, lotions, ointments, and haven't found our magic treatment yet. In the past few weeks we've noticed a definite increase in symptoms, despite the limited diet, and most recently, the liquid diet.

Yesterday we noticed a pretty major increase in her eczema, to the point where she pretty much looks terrible. I left a message with her allergy nurse at the end of the day, anticipating an a callback from the doctor sometime today.

We had a terrible night last night. I dont' think that neither Brian nor I slept for more than one consecutive hour last night. Kara tossed and turned, was so uncomfortable from her skin. My alarm went off this morning and I let work know that I wouldn't be in, and with that re-set the alarm for when the appointment line at our local clinic opened. No need - Kara was up, and with Kara up, Brenna was too. I was waiting for a call back to see if Kara could get in to see her doctor and decided maybe I should just call to Kara's allergy office to see if by chance she could be seen today. I called down there, spoke with the nurse and she fully agreed that Kara needed to be seen and they were able to get us in at 1:00 today. We had about an hour and a half to make plans and get on the road!

I was worried about this trip - Brian was unable to leave work and with me being up most of the night I was a little nervous about driving this trip on my own with Kara. It's a good 2 1/2 hour drive. Luckily my mom was able to make the trip with us, which was great because it ended up being a very long day!

We got to the clinic a little early and the doctor took us back early. We went through how Kara has been since she last was seen, explaining that even that week that we had seen her last, Kara had ended up in the hospital. I hadn't updated her on our latest food issues, the elimination diet and down to Neocate again so we went through the timeline for all of that.

Kara had a lot of poking and prodding at again today. She was out of sorts and looked awful so it was a long day. She had some labs done for cultures, an immunization because one of her immunization titers didn't come back the way they should due to her IgA deficiency and in the end, was skin pricked for bunches of things again.The final report was that the doctor firmly believes that the eczema is environmental, meaning that something in the air is setting her off so much and it's clearly not something that she is eating this time. She thought for sure that Kara's ragweed test and even possibly the trees and grasses would come back high but in fact showed nothing. Neither did any of the animals! She said that she's sure this is only the beginning and we'll see a positive as time goes on. Kara's milk and peanut reactions were very discouraging. She had a high reaction to peanut, much worse than the last one she had, and the dairy result was definitely positive as well. Obviously, she hasn't had any peanuts ever, and no dairy in abotu a year and a half so we can't blame those on the skin!

We aren't going to be doing anything too different as far as the skin care and medications go. Her face, we are going to start using vaseline on. My girl is a greasy, shiny mess! We are going to start trying moisture wrapping and giving her a daily dose of zyrtec as well as benedryl as needed. We'll get to the bottom of this one way or another!

We are to finish out the two weeks of Neocate only. At the end of that she wants her scoped right away and then for us to get back on the road of food trials. We mapped out a little plan of doing five day trials, pending scope results, of course. She is going to be talking with GI about this plan and hopefully we can get this show on the road. She would like to see Kara eating again as soon as possible.

Even though these last few weeks have been tough, it's amazing how one challenging, but educational day can turn our outlook around again. My mind is spinning with all of the info from this appointment and I'm sure I'm missing some pieces to our day but I feel like we have a good plan in place for right now.

Liquid Diet

2011-09-15T20:22:00.000-05:00

Well, we made the decision to start the Neocate only diet a week ago, last Friday morning. The week has gone just as smooth as it's gone terrible, if that makes any sense. She has done exceptionally well with it, but her meltdowns have been terrible.

We've done pretty well with distraction and I was quick to catch on when she was getting hungry. At the first sign of crankiness, offer a bottle. We've done a lot of snuggling and rocking in the chair. She's been taking enough in and I've been weighing her daily, every morning, to make sure she's maintaining her weight.

One evening this week, I was away. I received a text from Brian letting me know that I needed to come home, that Kara was really upset and consolable because she wanted to eat. Her words were "no more owie tummy, my owie tummy all betta!" Talk about heartbreaking. I couldn't get home quick enough to hold my girl. Last night we had another one of these instances where she was crying inconsolable about food. I understood at that point what Brian was going through that night. She just sobbed and sobbed on my shoulder. I just have to remind myself that we have one week down and one week to go and this is to help her get better.

I have had to be reminded a few times that despite Kara not being able to eat, we still need to eat as well as feed our four year old. I wish it was as simple as to be able to say that no one is allowed to eat or even talk about food in front of Kara but we still need to eat. This has been trying, perhaps the most trying phase of our lives so far.

Despite how difficult this diet has been on Kara and our family, we are seeing some improvement. Kara hasn't complained much of a tummy ache and her diapers have been almost normal. We have quite a problem with eczema which is nothing new but the fact that tummy aches are better is promising. Are we beginning to see a baseline again? Only time will tell, but I sure hope so, so we can get back to food trials again!

Here We Go Again

2011-09-09T08:06:00.001-05:00

Kara's been puffy lately. She got home from daycare Wednesday and it was the first think I noticed - she was puffy, pale and had dark circles under her eyes. No other symptoms besides those but really, she looked absolutely terrible. I called her GI office at the U that night and left a message with her primary's nurse yesterday morning. We also decided maybe we should pull beef from her diet as well.

Yesterday's menu was applesauce and potatoes. I also sent some corn to daycare. I got a message from our nurse, telling us that the doctor said to pull corn and that she wasn't sure what else to tell us, other than keep trying to get through at the U and wait for Cincinnati to come through. My heart sunk, I wasn't sure what to even think anymore. Pulling corn takes away kix, corn chex, corn pasta, all these staples that we started with and that we have resorted back to! What the heck can you really do with apple and potato? Grrrrrr...

I got home from work and let Brian know the suggestion and that I was also waiting for GI to call me. With that, I took Brenna to her first night of dance. Halfway through dance, my phone rang and it was Kara's "other" GI calling, the new one that we saw at the U a few weeks ago. We discussed everything that's gone on since we saw her last, Kara's rollercoaster of symptoms. How we pulled wheat, things got somewhat better, and how we had to pull the beef last night. With this, she strongly suggested we go with Plan B, which is something we had discussed at the last visit. Plan B is a Neocate only diet. ONLY. As in, it was hard enough to remove 15 foods from Kara's diet but now we need to remove EVERYTHING and rely on formula alone. On a 27 month old. GULP. She discussed with me how she wouldn't wish that upon anyone, understands that it's going to be one extremely difficult thing that we, as parents, will have to do, to deny our child food and hope that she understands, but it will be best. It sounds like Kara will be scoped at the end of all of this, we just need to give it a minimum of two weeks to see how she responds.

This doctor was so great on the phone. She talked to me like I was a real person and let me know that she understands how awful this could potentially be, and to definately keep them in contact for the next couple weeks and we'll decide from there what our next step was. I got off the phone with her and wanted to cry, but sucked it up and went back to watching my big girl dance.

We got home and Brian and I talked about this, trying to come to an agreement of what we need to do. I would LOVE and almost feel the NEED to keep some sort of solid in Kara's diet. KIX, a staple since she's been 9 months old, something, just for a little snack here and there. We need to decide what we are going to do, pick a day and do it. The sooner, the better, for Kara's sake.

The FPIES Foundation

2011-09-05T22:04:00.000-05:00

Wednesday morning was the big launch of a project I and a group of 7 other amazing FPIES Mom's have been working on feverishly for the past few months. The FPIES Foundation.

I wrote a very brief post the other day about our foundation but that post doesn't do our foundation any justice! A few months ago I was approached by a friend, a mom, who along with a few others had a vision of a central hub where Families and Providers can all go to learn about FPIES. A place where a mom could go at two a.m. after getting home from the ER, after being up with a screaming baby all night, and find all sorts of resources in one spot instead of search after search, wondering which literature would be the right one to bring to her doctor, wondering which symptoms may be FPIES, wondering what their next step should be in this journey. We are all experienced moms, with children struggling with the unknowns of FPIES. We simply took what we wish we had and put our minds together to create this amazing foundation.

We saw the need for help now, as more and more moms have been coming out lately, having similar questions, replies from their physicians and the other similarities that all of our families share. This is a work in progress, as every foundation I'm sure is, but I feel that what we have launched has already helped so many! Stay tuned as our minds and bodies continue to work around the clock to improve this already amazing cause!!! We are working hard!!!

www.thefpiesfoundation.org

Another Fail

2011-09-05T09:42:00.000-05:00

Tuesday afternoon after work I picked the girls up and headed home. Kara immediately started asking for a ba-ba, which is typical for her. She drank her bottle down and snuggled. Ok, she's tired...had a long day. I can handle that. Shortly after, she started fussing about having a tummy ache again and sure enough, we dealt with tummy problems off and on through the evening. At one point I was going to leave a message with the doctor saying "just kidding! We're having trouble again!" but decided against it. Maybe it was a fluke thing and decided to ride it out for a few days.

We continued on the wheat, beef, apple diet and things progressed through the week. Four a.m. crying out "tummy.aches. tummy.aches." On Thursday I decided to call and leave a message that we are having problems. The nurse called me back and said "PULL WHEAT." and let us know they can see her on Tuesday if needed. I wanted to cry. I had a sinking feeling that we were building towards an intolerance to wheat but was in denial. It's pretty discouraging to keep having food fails now, on foods that for months (or even a year!) we thought were safe. I dont' know where we went wrong - trialing foods too quickly, I'm sure, and then having symptoms build so slowly that we didn't notice a difference until it became tummy aches and icky diapers four, five, sometimes even eight times a day and having so many foods in her diet that we had no clue what was going on.

This week has been difficult. With removing wheat, we added potato. Not sure if we were supposed to do that or not but she needs something to fill her tummy and potato's were originally thought to be safe. Kara is used to eating and was really good about knowing what she could have so this elimination and being nearly two and a half is one of the hardest things we've had to go through. Life is just not fair.

On a more positive note, Kara has been wheat free for three days now and her tummy seems to be improving. She's having occassional tummy aches and was up a few times last night but I'm confindent that it's still from the wheat being in her system and trying not to think that she may be building towards yet another food.

Tuesday's Appointment

2011-09-05T08:58:00.000-05:00

Kara saw her doctor on Tuesday, a follow up from the latest hospital stay. We were so excited and she had her own little statement to tell the doctor. I should have gotten a recording of her saying it, it was too cute! "Owie tummy is all bett-a. No more owies!"

We were so excited to report that Kara had been tummy ache free for that week. What we weren't excited for, however, was the report of the eczema. It is back, in full force. I think I had previously mentioned this. Not only her normal, horrible problem spots on her poor feet and ankles but her bottom, behind her knees, her wrists, her arms, even her tummy was beginning to get that familiar, rough feel to it. "It has to be the wheat" is what her doctor told us. "Watch her on the wheat."

Our clinic received their flu shots already, earlier than ever, this year. We debated giving her the shot already, because she was actually healthy but opted against it. This is something she's going to need this year, whether we like it or not. With her immune system being so low we can't take any risks. Now watch, we'll be kicking ourselves that we didn't just do it when we did because we'll have a run of illness now. I hope not!

We discussed how we are waiting on hearing back from Cincinnati (still waiting, getting a little discouraged!) and how Mayo actually told us that they'll see Kara but Cincinnati or Milwaukee would be better choices to really dig into what is going on with Kara. (WOW!) I explained that with three different specialists telling us that, I guess Cincinnati is what we need to do! We left this appointment with no plans for any scheduled follow-up - we are usually seen two or three times between anything scheduled, anyway! We have to keep the flu shot in the back of our minds and update her of any changes, of course. Oh, and Kara has maintained her weight! Yay!

The FPIES Foundation

2011-08-31T21:46:00.000-05:00

I am happy to announce The FPIES Foundation and couldn't be prouder to say that I am one of the founding members of this wonderful organization!

http://www.thefpiesfoundation.org/

The extreme dedication of this group of eight amazing mom's never ceases to amaze me. It's a big deal already and there's even bigger things to come! Stay tuned!

Week in Review

2011-08-28T20:10:00.000-05:00

Kara has been feeling really good the past few days. The lack of food in her diet has been very challenging as she's not really interested in eating anything anymore and has been pretty moody but I can handle that since we've been tummy-ache free. We've bumped up the amount of bottles she gets a day, basically, if she asks for one, she gets one. If she's fussy, we offer it.

She sees her doctor on Tuesday, a check up from the hospital stay two weeks ago. I'm interested to see if she's been maintaining her weight despite the lack of appetite.

We're still waiting to hear back from Cincinnati as far as a schedule goes, who she'll be seeing and what procedures she'll have done while we are there.

That's all I have for an update today. Short and sweet!

The First Dinner

2011-08-24T22:04:00.000-05:00

We got home Monday night and it was time for dinner. Kara's meal was some beef, wheat pasta and some applesauce. Noodles (noo-noo's!) are her favorite. This child would eat noodles for breakfast, lunch and dinner if we let her. Easy enough, right? Well, she eats ketchup on nearly everything. EVERYTHING. (If you are thinking that that might be her tummy problems, tomato has been safe for a long time...and if you are "ewe-ing" at ketchup on noodles, ketchup on everything, it's not like she can load her pasta full of butter and other seasonings!) :)

Anyway, I brought her plate to her and she immediately asked for ketchup. My heart broke. I got down to her level "Kara, your tummy doctor said no more ketchup, sweetie. She said it might be making your tummy owie." "Oh! No owie tummy Mommy" is what Kara replied, rubbing her tummy. She took her plate and started eating it up like it was no big deal. Just before dinner Brian had a battle with Brenna at the grocery store about how she wasn't getting a treat that resulted in a major meltdown and then I had to take ketchup away from Kara, the one food (food?) that she loved in case it's causing her problems. Kinda puts things in perspective, doesn't it?

This is going to be a rough few weeks. Patience, patience, patience.

Two Choices

2011-08-24T21:49:00.000-05:00

We saw a new GI doctor on Monday. The same facility, only this was the doctor that Kara's family doctor had spoke with on the phone when Kara was in the hospital, the one who suggested Cincinnati or Milwaukee for Kara's care. I was impressed with the fact that she really seemed to know FPIES and how it works. She explained all of the allergy parts of it and how complex it is. She explained how tough it is on parents, children and providers because there is never any one answer. Each situation is different - each child, each reaction at times, everything. We went on about our frustrations and discussed Cincinnati vs. Mayo, being more and more convinced that Cincinnati is the way we need to go. Then it was time to discuss our options with Kara in the meantime.

She gave us two choices. One, we can take Kara completely off ALL food but Neocate for four weeks and then she could be scoped at that point. I think we both gasped at that suggestion. NO WAY. It's hard enough explaining to Kara on a daily basis that she can't have something because it's owie on her tummy. I couldn't even fathom taking ALL food from her. We did that a year ago, it sucked with a 15 month old, I can't imagine with a 27 month old! The other is to try bringing Kara's diet down to three foods that we are pretty much certain are safe and only stick to those for 4 weeks. This could prove to be a little more difficult if she continued to react to one of those three foods, we'd have to guess at which one to remove and potentially could be back to the Neocate only if those three don't end up working out. I'm not quite sure of the plan past there - scoping at the end or not...my head was spinning a little bit by the time we left the appointment and we no sooner left the room and started talking about which foods to even put her on. We are to call her with our decision and I'll find out more then, I guess. We went back and forth between foods that we are pretty sure are safe, to foods that she likes more than others, to foods that would offer more options. This conversation consumed our ride home. In the end, we are sticking with a diet of beef, wheat and apples. That's it. Four weeks. We'll see how it goes.

The Plan

2011-08-15T14:52:00.000-05:00

Last week we had Immunology on Monday and then an appointment with Kara's primary doctor on Tuesday. Since then I've still been trying to process what the right thing to do is and have been an absolute rollercoaster on my decisions. (Or lack of!)

Our frustrations with the GI department at the U of MN have gotten out of control. Our doctor has sensed this and being at this appointment reminded me of the last conversation I'd had with her when I started to tear up "I'm just so frustrated!". Brian was with at this appointment on Tuesday, as I knew it was going to be a big one, having just found out about how low Kara's IgA actually was, with her other health problems. We were both trying to referee the girls and talk with the doctor which was difficult. She put it out there that she thinks we really need to get another opinion, a brand new set of eyes on Kara because there are obviously other things going on with her than "just" her typical FPIES symptoms. She carefully put it out there that she really thinks we need to get a consult at Mayo. Now. I wasn't really happy about this - I had finally found faith in Kara's GI doctor, despite the rest of the department, or the nurse coordinator anyway, being absolutely awful to work with. Besides that we already have to travel 2 1/2 hours away for Kara's appointments, and Mayo is a good 4-4 1/2 hours away from us. Brian and I looked at each other, I think feeling the same thing. This isn't going to work. The doctor explained the process of getting her in and how she felt Kara could benefit from a consult there and by the end of the appointment, I think we were all on the same page. I was ready to start over, from scratch and get a fresh opinion on everything that has been going on with my girl in the last few months.

We got through last week, that appointment being Tuesday afternoon and knowing that the process would be a while and if we didn't hear something in a week to let them know. Wednesday I went home early from work because of not feeling well, Thursday I stayed home. It's time for those fall allergies and they have left me feeling awful. Friday morning I went to the clinic and actually had an appointment with Kara's doctor for these allergies and we just briefly talked about Kara again, still going with the same plan. This is where you read the previous post about how quickly things changed for Kara and how she ended up in the hospital Friday night.

Enter Saturday morning. Our doctor came to Kara's room and we spoke more about Mayo, finally realizing that my girl is SICK and we need to have another look at her, there is no choice. She got on the phone with the on-call GI doctor at the U and that's when they decided that what Kara was going through was a classic FPIES reaction, only pretty severe. She was discussing the rest of Kara's symptoms and let the GI doctor know that she was going to be sending us to Mayo and the doctor responded with the fact that she doesn't think Mayo is going to be able to do any better for Kara than they are able to do and really feels like with Kara's complex history and a complex family history of GI problems, that we need to jump right to the speciality centers. Her suggestions are Cincinnati or Milwaukee. GULP. "How the heck are we supposed to do that?" I asked. We are struggling! I guess things have a way of working themselves out and that Cincinnati has a great Ronald McDonald house. She left us to think about all of that and said we'd talk about it the next morning when she was in again.

Throughout the day it was all I thought about. Milwaukee is 6 1/2 hours from here and Cincinnati is 13 1/2. Either way it's going to be quite a trip. Cincinnati, from what I've found, is "better" - a little more specialized and has the team approach right there of exactly what we need: gastroenterology, immunology, allergy, dermatology, possibly hematology amongst others. I settled at the moment that if we have to travel at all we might as well go to the best instead of the closest. Brian and I talked it over, I made some phone calls with some resources I have, did a lot of searching on the internet. My thoughts went from "lets go" to "hell no" every five minutes.

That evening I had a decision that in my mind, worked fine. We need to find someone in MN to just do a scope on Kara to see what we are dealing with and then, if needed, we'll go out to Cincinnati. Simple enough, right?

Dr. M came in the next morning and I explained this to her. Basically we don't have much time to waste. If we messed around with trying to get it done here only to go there right after, they would start over doing their own labs, their own scopes because they'd want different looks at this, a different slide of that, and it would be putting Kara through all of it twice. As it is she's had way too much blood drawn, way too many needle sticks and it's heart breaking. Besides, she has had anesthesia reactions both times she's been under so it's just something we can't mess around with. We need to do this. There is no questioning it.

REACTION

2011-08-15T13:37:00.000-05:00

We had a lot to look forward to this weekend. The annual summer festival in a neighboring town, a wedding of two good friends, sister and brother in law with niece in town, lots of fun and time to relax for once. Little did we know how fast our plans would change!

Friday evening was spent at Grandma and Grandpas house where the girls all played nicely, we had a nice family dinner with the little girls at their very own table, more playing outside and followed by a little bonfire on the patio. We were having a wonderful time visiting, laughing and Kara was being SUCH a ham through the night. She was making us all laugh!

Her tummy aches were plenty that day, as they have been lately and due to having a blow out diaper she was in a spare pair of clothes that Grandma had there for her. I clearly remember pointing out her buddah belly that seemed to be sticking out of her shirt and thinking when that shirt became that small on her. I watched and commented as she started to become more and more pale, but she was still so happy, laughing and running around.

It got late and it was way past our kids bedtime by the time we finally got home. We carried the big girl in the house and put her to bed and I snuggled Kara as she drank her bottle. Kara sat straight up after her bottle and let out a very large, icky sounding burp - the kind where you wait for her to start puking but nothing came up. She was acting really off so we had her sleep with us, laying her down as we got ready for bed. We just climbed in bed and Kara sat straight up, starting to vomit. This was scary. So, so scary. She's had plenty of vomiting lately but this was different. She couldn't stop, it was constant, it was coming out of her mouth, nose, she was choking on it, and again, couldn't stop. We looked at each other in terror as we got her out of our vomit soaked bed and into the bathroom. We didn't quite know what to do - Brian got on the phone with his mom - "Come out here now, Kara's sick" and demanded that I get in the car and get on my way to the ER with her while he waited for his mom since Brenna was sleeping. (We are five minutes away - it's quicker to fly up there with her than to call an ambulance in situations like this.) I said no to him, that I'd wait so he could come with me but he sent me on my way. I was absolutely terrified. I called the ER on my way in to let them know we were on our way. We got there and they quickly took Kara back and sent the doctor in. They had briefed the doctor on Kara's care and pulled her ER letter from her doctor and allergist. They got the IV started and blood drawn right away and this is when I pleaded with the doctor to let us stay here instead of being transferred. I explained our situation two weeks ago where we were transferred and she was treated with IV fluids and we were sent home, still waiting for any sort of continuing care, that it was a waste of our time when we could have stayed right here at our hometown hospital. She listened, letting us know that was fine but if her lab work showed anything than we would have to go back there.

Kara hardly fought the IV stick, I was told she had no tears through her crying, and she was cold and clammy as well as being white as a ghost. She was also tachycardic again. The ER doctor called Kara's doctor and they agreed to admit her here in town and her doctor would be in in the morning to evaluate her. We finally got to a room about 3:00 in the morning and after going through the admission process, were ready for some rest. Kara was poked and prodded at, had to have additional blood cultures done and was just done being messed with and ready to sleep.

The next morning, despite her IV running all night, she still hadn't had any wet diapers. Our doctor came in and we went through everything that happened the night before. What happened is what sounds exactly like her "classic" FPIES reaction. Both Brian and I thought and thought about what she could have possibly reacted to but came up with NOTHING. The dinner the night before was all Kara safe - at one point I panicked thinking Kara had Brenna's sippy but then realized it was her own. We still have NO CLUE what could have caused her to get so sick. The scariest thing is that whatever it was, wasn't much of anything and caused what I think is the most severe reaction in Kara yet.

They kept Kara's IV going at a pretty good rate since she hadn't had any wet diapers yet. I think it was 10:00 that morning before she finally peed, so a good 12 hours since the reaction had happened. We were on the plan of her being on water and ice chips only and to see how that went, while the doctor worked on making some phone calls to see what we should do next. We were given some options to think carefully about and be ready to talk about them more on Sunday morning. I haven't had much of anything to say about last weeks options or our newest ones yet as I'm still processing and not quite sure what the heck we should do next. Once I get this figured out in my head I'll blog about what the heck we are going to do.

Kara was able to be discharged yesterday morning. Her vomiting had stopped but she is still having pretty icky diapers and tummy aches. We've started a log of everything that goes in and everything that comes out. We took many, many steps back in her diet and she can't be in daycare, for at least a week. She will be starting a new medication tomorrow, an antibiotic to hopefully help with the gut bacteria but we dont' know what that will do to her tummy either which is why we were instructed to wait until Tuesday, to give her tummy a little more time to rest.

We are home today getting things figured out with follow up appointments, getting meds compounded, settling things with work and keeping a close eye on Kara. She's had a few episodes today where she's become really pale and has cried out with a tummy ache but so far, she's been ok. I don't know when I'll relax again, knowing how quickly things went downhill the other day.

Immunology and Hospital Follow Up

2011-08-09T20:21:00.000-05:00

Immunology has me so confused. I learned a lot yesterday and it has my mind spinning. IgE, IgA, IgG, IgM,P,Q,H...It's not that bad but might as well be. We learned that Kara's IgE levels are high, which is completely expected. She's a "highly allergic" child based on how sensitive her skin is, our struggles with eczema despite the treatments we do, and her dairy allergy. The IgG (please correct me if I'm wrong) is more to do with the FPIES part of things but as the doctor explained to me yesterday, this is what is "believed" but since so little is known about FPIES, there's no for sure anything! All of her levels were off in one way or another, again to be expected just from what we knew about Kara based on her medical history, but the IgA one is the one that was most concerning. The IgA level was very low which completely explains why Kara gets SO sick when she gets sick and gets sick OFTEN. She doesn't have much of a fighting mechanism in her at all. The Immunologist wasn't the least bit surprised to hear how quick illness hits her, as I explained how sick she got in the matter of a few hours that put her in the hospital. She scoured over pages and pages of medical records - office notes, ER and hospital records and layed all of her past labs out in chronological order trying to make some sense out of what her blood is doing when she is sick.

I started explaining Kara's tummy aches and while I was doing this Kara was an embarrassing, naughty little girl. She was on my lap, screaming "MOM" in my face, just being completely obnoxiously two years old. I would calmly get her to focus on me so I could keep talking with the doctor and at one point apologized "I'm so sorry, I don't know WHAT is going on with her, she's usually such a happy girl and the perfect patient!" At that point, Kara actually HIT ME as I was talking to the doctor and not her! I swear I could feel the residents eyes of horror on me as the doctor asked her to go get the Duplos for her to play with. Those distracted Kara for a little while so we could continue with the appointment. Kara had started having gas at this point and it was SMELLY! She had a tummy ache - no wonder she was being so naughty! She started with the gas and followed with one of the nastiest diapers I've changed in a while, that could have cleared a room, only the doctor was actually pretty thrilled that she did this! "Perfect! Let's take a look!" We collected a sample and with that she ran loads more of the stool tests. She sent me home with an order for some additional labs. She was shocked that no one has tested for c-diff, giardi, and a bunch of others. She said they'll probably be negative but how wonderful (Wonderful?! In an odd way, I guess!) it would be if that was all (again, ALL?) that it was!

We are going to wait for these labs to come back and if they show nothing then I think that will be reason enough for another GI workup. She explained that because of the low IgA Kara is going to be so much more susceptible to getting sick and because of that, there are many precautions we'll have to take, especially as winter comes. She'll be calling me when she receives some more of the lab results back and we'll go from there. it was a good appointment and there is so much more to it but I can't get what's processed in my head down at all!

Today we saw Kara's family doctor for her hospital follow up. We talked about her hospital stay and how we can start at our hometown hospital and be admitted and go from there - that it's not necessary to be transferred to the U since they didn't do anything for us there that couldn't be done here. We went over all of her labs from the last two weeks. We talked about her Immunology appointment yesterday and what measures we can take this winter to help keep her healthy. (NO DAYCARE, in a perfect world, but understands that it is necessary.) I asked if she'd have any pull with our GI doctor as far as getting another scope and she said she doubts it but if all these stool tests come back ok than it will probably be necessary. We talked about the lack of communication between her specialists and how I feel like there is more going on, and I think it was agreed but that we can't seem to get anywhere.

We have lots to think about and my mind is absolutely fried with all of this information. We have lab results that we are now waiting on and some decisions to make. I hate this game.

Follow Ups

2011-08-09T19:51:00.000-05:00

Kara seems to be doing much better now, with the exception of the "normal" icky tummy aches and diapers that she's been having. Despite MANY annoyances with the U of M as far as getting a follow up appointment made, I think we might be getting somewhere. The soonest I could get her in for a hospital follow up with her GI doctor was six weeks away. This was after many phone calls and a few pages to the GI nurse where I explained that we were transferred to the U for continued care because the physicians here didn't know what else to do with her. I'm still irritated with this because they treated her down there for gastroenteritis and sent us home - come back in the middle of September! :) (They could have done this at home instead of having us drive 2 1/2 hours at 1:30 in the morning. A few days later, Kara's GI doctor called me and settled me down a little bit about this (I was fuming, good thing I didn't blog about this during the process!!!) and explained that after talking with another physician at the U that they decided that Kara should see a new Allergist/Immunologist. I asked about scoping Kara again, thinking that it might be necessary because we still have no answers to why she is in daily pain and why her food keeps running right through her and she explained how she wanted to wait until the Immunology Consult and go from there. Still no appointment was made and it was explained to call her (extremely non-helpful) nurse to get her in. Whatever. My frustrations were way too high to continue worrying about this. I like to be in control and this was clearly not the case here! So, I decided to sit and wait. Things ended up working out - I got Kara in to see the new immunologist yesterday, a week later, and we saw her primary doctor today. We spent the weekend with family near the cities where Kara played and got lots of special attention. Sunday we travelled a little further south and visited with another FPIES family and that afternoon we took Kara to the MN Zoo where she had a blast with the undivided attention she got from my cousin and her boyfriend who came with us. Kara also got to have treats there - cotton candy and a frozen lemonade drink! She was loving it! It was a nice change to have some fun before appointments instead of making the long trip all in one day.

Saturday/Sunday...Home Again

2011-07-31T21:25:00.000-05:00

Kara ended up sleeping away the entire first shift at the hospital on Saturday. They let her be, since she'd had such a rough night and had been up the entire time, very considerate of letting us all rest that first day. Brian and I rested off and on while Kara slept soundly in that large hospital bed until 3:00! By the way, getting the bed was THE BEST decisions we made. They asked in the ER if she slept in a bed or crib. I said a crib but can we please have a bed here because the last time she was in we took turns with her in the chair, she never touched the crib other than for a few hours each night. This way she had her own little spot - tucked in with her blankies watching tv, playing toys on the bed, coloring, much better and much more comfortable for snuggling Mommy and Daddy time.

Friday afternoon, after Kara woke up we got her to drink a bottle and had some company come and visit to break up her day a little. It was so nice to see familiar faces and good for us to have some support at the hospital as well, since we were 2 1/2 hours away from home! She was feeling much better and she didn't end up having anymore diarrhea that day but had a tummy that was FULL of gas which caused her pain off and on throughout the evening. By that night, the Resident came in again and said she was pretty sure we'd be able to head home in the morning. Kara started eating little bits here and there and was drinking pretty well. We went for a few walks to try and get that gas out of her tummy and did some more playing to try and wear her out after sleeping all day.

By 11 last night we finally got her to settle down...right before shift change. I think we were asleep for about 20 minutes before they came in to check on her, this time insisting they had to. We'd been anticipating IV problems the entire time (And thank GOD it held up for us!) so they had to closely check that out, which required light, and they apparently needed vitals, including a blood pressure which I tried to fight. Kara fought the battle much better and after two attempts of her screaming at the nursing assistant, she called it quits, left it on her arm, and was planning on coming back and hitting the button later. That being on her arm aggravated her as she was trying to fall asleep so eventually, the Mamma Bear took it off her arm and threw it on the floor. (Crabby? Maybe a little. Do you blame me? We wanted sleep!) We didn't get bothered anymore through the night, that I remember anyway!)

This morning I woke up at 7:00 and figured I'd get myself awake a little bit. Got up, brushed my teeth, washed my face and climbed back in bed when the Resident came back in. She said we were ok to go, she just had to page GI to get his opinion and he'd come check her out. I figured that would take a while so that was my opportunity to hop in the shower. Well, go figure, I had just got in and shampooed my hair when Brian opened the door..."They're here" "Who?" "The team, all of them." "YOU ARE KIDDING ME." I quick rinsed, got out and threw my pj's back on because they were the easiest. I came out of the bathroom...go figure that would happen to me...

I went through everything with the GI doctor. Basically, they only handled what they figure was a virus that she got. The lab work shows that it's viral and since she'd been vomit and diarrhea free she was ok to go home. I asked all kind of questions - when to follow up, what about how things have been going slowly downhill for the last month or so, we have NO baseline, what are we supposed to do? He explained that we needed Dr. S to follow up on that because she knows Kara's care so well, as opposed to him trying to guess. He told me (WARNING to other FPIES Mom's reading this! You are NOT going to like this one bit!) that FPIES kids grow out of this by the age of two and since she's a little over two we should be at the end of our road as far as that goes. GASP. I bit my tongue. No clue where he got that info but it is SOOOOOOOOO conflicting and must be from like 1979 or something...when these babies didn't survive. He asked if she's had an endoscopy and I explained yes, but it was when she was only on one or two foods and so we had a great baseline at the time so the scope was normal. I asked different questions about eosinophilic disorders, which he made it sound like she could have something like that going on but mostly just stressed that we need to work with Dr. S about this.

We checked out of the U of M at 10:00 this morning and were home shortly after noon. We stopped home to get clean clothes on and then went to Grandma's to get big sister. We ended up spending the day there, actually at Great Grandma's on the lake, watching the power boat races today and the girls played a little bit. This Momma got a nice, long, much needed nap and break. Just what I needed and perfect for Kara to be with her sister, outside and not being cooped up in the house or hospital.

Kara did start eating today...I've been extremely careful about what she's eaten, making sure that they are foods that we knew were 100% safe, basically foods that she had in her first few trials. Unfortunately, we are back to foods running right through her again. After having icky diaper #7, I called down to the U and they paged the GI on-call who is the same doctor we've been dealing with since Thursday night when our hometown ER called down. "Basically, she is getting over a bad strain of gastroenteritis. Even though she was better this could hang in there for as much as a week or more. It's perfectly normal." I explained that it's the same symptoms as before, before we even went to the ER the first time, what sort of brought us to the U to be addressed Friday night. Upon hearing it's normal, I let it go.

I'll be on the phone at 8:00 a.m trying to get a hold of Dr. S. After that, getting that immunology appointment made. Hopefully this is the last segment of our exciting weekend. I'm exhausted, physically, mentally, emotionally. Defeated, once again. But, we are home now and that's all that matters. I'm hoping Kara sleeps well in her own bed all night and that tomorrow we can get somewhere with everything that needs to be done that should have been done over the weekend.

Anyone do laundry? Clean house? Fold clothes? Organize clutter? Clean bedrooms? :)

Yesterday, today? What day is it again???

2011-07-30T21:46:00.000-05:00

Yesterday morning Brenna woke up nice and early. I got her set up in the recliner with a bowl of dry cereal, PBS kids and a blanket and explained how Mommy was up really late at the hospital and asked her to be a really good girl so I could get some more sleep before Kara woke up. What an awesome girl, she let me be so I could sleep a little longer. I woke back up not too much longer wondering how Kara was going to be. Almost afraid to find out, I laid in bed waiting to hear from her. Not too long after, she started calling out. She sounded ok, and we headed upstairs to get her.

She was happy to see us, and had to make sure to grab her usual three blankets, the stickers that had fallen off her pjs in the night and her hospital bracelet that she was holding when I put her in the crib. We made our way downstairs and she was warm. I took her temp and it was 103. Dang. I called to the ER to see what exactly we should do and was told to see our primary. Well, it was Friday and our primary isn't in on Fridays. Neither is our second choice and most of the time there isn't a third option for us. It's just too hard to start all over trying to get a different doctor to understand Kara's condition and how everything is somehow linked. As I explained to the ER doctor the night before, most often, we just wait things out at home if we can. He understood exactly what I meant by this. I called the clinic and the doctor on call was one that I was ok with seeing, especially with the ER records and everything from the night before.

We dropped Brenna off with a friend so she could play with other kids - stay busy playing and keeping her mind off her sister. She was so concerned and actually crying that she wanted to come with me the night before when I was leaving with Kara. She was happy to go play with Alana and Aidan and had no problem with me dropping her off and taking Kara. Kara and I headed out, on our way to the 2nd doctor in less than 12 hours.

The doctor we saw is one that I had when I was little so he knows me, my family and had actually seen Kara once before and remembered that she has some pretty unique health problems. We went over everything that they had ruled out and he ordered a chest x-ray because that was about the only thing they didn't do, due to her lungs sounding clear. He agreed that they were clear but thought it was still a good idea. Of course, the chest x-ray came back clear. He decided that this was probably something viral that we were dealing with and since she had been on fluids the night before, didnt' feel that she was at that point yet this time around. He explained to keep doing what we were doing, and that he was on through the weekend so if we had any problems to have him paged, if needed he'd have us come in for fluids.

We went home with my girl still running a 102 temp. At 4:30 I called that doctors nurse, explaining that her temp had stayed at 102 all day long and she was starting to have pretty bad diarrhea, but she had been playing pretty good throughout the afternoon. We went about our evening and I had Brenna go with Brian's Mom for the evening and stay over night, just in case. Besides, Brenna needed some attention and with us both focusing so much on Kara she wasn't too happy.

We put Kara to bed around 9 or so, and she went down no problem Still had the temp but seemed to be doing better. Brian and I had just decided it was time for bed, around midnight and as we were climbing into bed, Kara started crying. We listened for a minute trying to decide what to do when she started crying really hard. "I'll get a bottle, you go get her." is what I said as Brian ran up the stairs. She started crying harder. "Grab a towel!" Shit, I remember thinking, she's puking now. I got up there and she was throwing up and choking, crying. We brought her to the bathroom, holding her head over the sink, got her cleaned up and then back downstairs. She started again in the kitchen, still choking on it. It was really, really scary. We cleaned her up again, grabbed some towels and headed up to the ER. Third doctor visit in just over 24 hours.

She had calmed down by the time we got there. I dont' think she had anything left in her tummy to come out either way at this point. While waiting to register, the doctor came out and saw us there. It was the same doctor that we'd had the night before and he asked what was going on. At this point, he said, there is nothing more they can do here and told us it would be best to drive down to the U's Childrens ER, where her specialists are, there's a pediatrician and a lot more experience in peds. He explained we could check her in and go through the process to have an ambulance transfer but it's not really necessary and they were all out on calls at the time so it would probably be a few hours before we'd even be on our way, where if we brought her ourselves, we'd get there before we'd probably even leave Crosby. At this point, I felt totally defeated again. We walked out the door and I was bawling before we even got to the car. Scared for my baby, frustrated that I had no clue what was really going on with her and REALLY not wanting to get in the car for 2 1/2 hours at 12:30 at night.

We got home to pack our bags. All I could think about was how we were going to get NO sleep whatsoever. Kara perked up at at the sight of us packing, somewhat excited to "go bye-bye". We debated and debated. Brian called back to the ER and spoke w/ the doctor - do we go tonight, or do we get some sleep and go in the morning. As he was on the phone Kara started pushing our bag around the kitchen, ready to go. The doctor said it's up to us - and basically who really knows what the right thing is to do at this point.

We decided to go for it but for the first 1/4 of our trip kept questioning each other. Kara stayed awake the entire time, talking, watching a movie, fussing here and there. We arrived a little after 3:00 this morning. We sort of laughed it off and explained that it was kind of embarrassing that we were there and drove that far but Kara is REALLY sick. They understood, it happens often. The U Ped called the ER doc from our hometown and was explained everything that's gone on. He also talked to the GI doctor on call who was the same one the night before that our hometown doctor had spoken with. This process was a waiting game as the faxed records back and forth and waited for phone calls. Shortly before 5:00 this morning, still not having slept at all myself, Kara had JUST fallen asleep. The doctor came in and let me know that they decided to admit her, start her on fluids and run some more labs.

The nurses came in shortly after, and I laughed - sure, you guys wait til she FINALLY fell asleep to come in and bug her! Go figure, right? They looked for a good vein to get her IV in and had some trouble finding one. Kara was NOT happy but mostly because they had her all wrapped up in a blanket to hold her really still. They did get the IV in in one shot but it was really tricky and didn't actually go all the way in but was working just fine. There was a lot of messing around with it, which just made Kara more and more mad but they finally got it all taped up and the fluids started after taking the blood samples.

At about 6:30 this morning we were finally able to get to a room, with still no sleep. By this point my mind was absolutely fried, I couldn't think at all and was confused by my days with having been up for the last almost 24 hours. I'm way too old to be pulling up all nighters! This is when we had GI in, the residents in, a new shift of nurses. It's all pretty much a blur and we've filled in bits and pieces as the day has gone on.

The Last Few Days

2011-07-30T13:02:00.000-05:00

Kara's tummy aches have seemed to be getting worse and worse lately. We can't seem to get a handle on anything and with her being able to somewhat express where her pain is now it makes it that much more heartbreaking. On Thursday morning, I was able to go to work early but unfortunately, had the girls' "babies" in my car so Brian had to make a pit stop at work to get them to avoid a more serious meltdown than what was already occurring.

I had left before Kara was awake, so I made sure to open her door of the truck to give her a hug and a kiss before she went to daycare. I remember thinking she looked puffy and commented that she had really icky breath. Huh. They went on their way.

Brian picked up the girls from daycare as well, I was home mowing the lawn at that time. I had finished and pulled up into the driveway and Kara held her hands up. Thinking she wanted to ride, I picked her up to tell her that we were all done. I thought she felt pretty warm, but it's hot and muggy, so that must be all because she'd been fine all day, there was no report from daycare. Shortly after, I had my hand around her chest holding on to her and noticed that her heart was racing and she was sort of grunting with every exhale. I told Brian "she's sick!" and he'd said she was a little fussy on the way home but there was no report of anything being wrong. We went in the house and took her temp and it was 102. I called daycare and was told she was fine - she ate like a horse, took a good nap, and after nap was outside playing with the kids. No indication that anything was wrong. I explained that she crashes really fast when something happens so not to worry. Kara continued to burn up,and not too long after, her temp was 104.2. I gave her some tylenol and she laid on me, then not wanting me to even touch her. The tylenol took her temp back down to 102 but soon after it was right back up to 104.

Around 8, I think, I made the decision to bring her to the ER when she wasn't really responding to much and was back to the groaning with her breathing. She was in tachycardia again, which is normal because of the fever - her pulse was 202! My poor baby. I explained to one of the nurses how complex her care is and that I needed the doctor to listen to me and please not brush this off as a virus or some sort of gastroenteritis because of her complex medical history. We gave a very thorough history and soon the doctor was in. He checked her over and everything looked fine - throat good, ears clear, no clear reason for what was going on. IV fluids were ordered as well as some lab work. Labs came back decent, but she had a high white blood cell count. He then thought we should get a urine sample which came back fine too. Next she had to have blood cultures done and IV Rocephin started because of the infection.

We were able to home shortly after 1:00 a.m. with the understanding that if she still had her fever in the morning we needed to bring her back in and talk about a possible transfer to the U since there is no pediatrician or specialty doctors at our small town facility. I took Kara home hoping and praying that we'd see a great improvement the next morning due to the fluids and meds she was given.

The Big Sister

2011-07-26T16:44:00.000-05:00

Brenna is our oldest daughter, turning four years old days before Kara turned two. She has been the best big sister to Kara since day one loving her up and helping me with her, often times nursing her baby right next to us. Brenna has learned from watching, never one to miss a moment and with that comes the things that she's learned by simply having Kara as a baby sister. Brenna was barely two and a half when Kara had that terrible first reaction. Brenna came to the hospital with us, being so scared and protective of her baby sister.

To this day, Brenna has been protective. Brenna is a little mamma and while playing with her baby, it's not uncommon for her to stop, look carefully at the piece of "food" she's going to be giving her baby and say "Oops, no baby, this has soy in it and soy is owie on your tum-tums." This has become our newest phrase when explaining to Kara that she can't have something, while rubbing her tummy and Kara accepts this.

One of those horribly miserable days post surgery, I was beside myself as far as what to do with Kara. After talking to both doctors, we had decided it was best for her to go to the Emergency Room. At that point I wasn't quite sure how the heck we were going to get there, having a very sick Kara and an anxious Brenna home with me. I finally sat down on the couch, feeling incredibly defeated and started to cry.
Brenna looked at me: "Mom, are you crying?"
Me: Yes, Brenna, I am.
Brenna: Why are you crying Mom?
Me: Because Kara is really sick and it just makes Mommy really sad.
Brenna: But Mommy, Kara is going to be ok. You always tell me that she is going to be just fine!

This child is an amazing nurturer. I realized I need to be strong and with that, pulled myself together, was able to put Kara down for a few minutes so I could get things ready to go and off we went.

If we ask Brenna what Kara is allergic to she can get started with the list: dairy, soy, rice, oat, green beans, and pears without too much trouble. It's not uncommon for someone to ask Brenna if Kara can have a certain food or not. She pays a lot more attention than we sometimes give her credit for!

Kara recently had to have some stool tests done. Brenna was exploring in the diaper bag to see what kind of goodies we had brought home with us this time. She pulled the clear ziploc bag out of the diaper bag and asked if we got more doctor stuff at the appointment! (Before Kara's surgery, they sent us home with a package of supplies to play doctor with to get Kara used to some of that stuff.) I explained no, you can't use that, it's for a test that Kara has to have done. That wasn't enough of an explanation so I went into some detail. She asked if she needed to help me, and if she could help me. She asked this constantly until the time finally came TO help me. Brian was gone, and she sat right there, handing me the gloves, the wipes, everything I needed. She was so excited to have helped Mommy with Kara's test. Now, a few days later, she's still asking when we are going to get Kara's test back, not quite understanding the process as well as she'd like to. At what point do I say no and not let her help? I dont' think I need to, she's concerned and learning, and letting her be right along side of Kara as she goes through these things is going to make their sister bond that much tighter.

I think I am stronger because of Brenna, helping us through this. At the end of a long day of appointments, the best thing is getting home to my sweet girl, waiting patiently to snuggle with her Mamma. I LOVE this girl and for being only four years old, she has sure grown up fast!

A Kara Story

2011-07-21T20:57:00.000-05:00

Kara was determined that she was going to wear big girl underwear last night and did pretty well in them for a while. After supper, she had an accident so I put her in a diaper and put her pj’s on. Brian’s Mom was over playing with Brenna, I was busy doing something, and Kara was quiet, which isn’t totally out of the norm for her lately, I just figured she was playing nice back in Brenna’s bedroom. She came running out of the bathroom, through the house with the bowl to the potty chair “I PEED!” she said, so excited! I looked beyond her and saw the trail of liquid that she splashed along the way and looked at Cindy, who was desperately trying not to giggle as I questioned Kara. “You peed? But you have your jammies on! Where is your diaper?” I asked, pulling at her pj shorts to find her diaper on, just as I had left it. I started thinking, she’s too short to reach the sink, what the heck did she do? I lead her to the bathroom to clean up the “pee” that was on her and so she didn’t slip on the trail she left. We got to the bathroom and there was wet, soggy toilet paper all over the floor as well as the toilet and floor around it being soaked with water. This child is genius. She dipped her potty chair INTO the toilet to fill it up so that we’d think she peed in it. I was ABSOLUTELY HORRIFIED, not sure if I was going to bust out laughing or bawling in frustration with the situation!

YAY FOR GI!!!

2011-07-20T21:00:00.000-05:00

Today was the day for Kara's much anticipated GI appointment. I typed the mental list into my phone on our way to the cities, while discussing things with Brian. I kept thinking of our family doctors words at Kara's last appointment, where I broke down in tears "we will get this figured out, Kendall, and if we don't, we'll send her somewhere else." Her, just as determined as me, to get Kara figured out, knowing how out of sorts she's been.
I had a list of labs that I wanted to talk about possibility of having done. Kara hasn't had much for testing other than a recent hemoglobin (which was fine) and when I've asked in the past, I was told they wouldn't mean much because we have no baselines.

I had it in my head that I wanted to have Kara see an immunologist. I can't put it into words how I came up with this, so explaining my reasoning to Brian in the car on the way down was extremely difficult. In my mind, everything seemed to fit together, and an immunologist seemed like the next direction to go. This made it onto my list, not quite sure how to bring it up, when I couldn't even make sense of it out loud!

The next part of it was explaining the frustration between the connections we've seen with Kara. The skin problems, with the respiratory problems, with the GI problems. They all run together. I KNOW they do. When one is flaring, the rest of them are bad.

We got to the appointment the nurse said "you are here for a follow up for reflux and diarrhea, right?" Um. Yeah. The new reflux meds that we were supposed to trial six weeks ago that we never even got around to starting. (Hey, it has been a crazy, insane, impossible to start anything new six weeks.) She got the vitals and the doctor was soon in.

Dr. S. came in and started asking how Kara has been. I let her know we've been struggling. The night waking, the naughty behavior, the trying to distinguish between what's pain and what's "two", the eye-watering-can't-get-out-of-the-house-fast-enough diapers, the gas, the burps, the near-vomiting, explaining every symptom we've had. I stressed to her that there has to be something more going on because she USED to be at baseline and now we have no clue what that is. Currently, it is clear that Kara has tummy pain nearly every single day. She's been able to tell us when she has pain and "owie tummy" is coming out quite often, MOST of the time, she is telling the truth.

Dr. S. is mostly worried about Kara's urpiness at this time. We are to do a four week trial of Zantac every day and if that doesn't fix the night waking and urpies than we are probably going to be talking about taking another look inside...aka scoping again. (knowing that she tolerated the anesthesia decent the second time around, and that steroids are a MUST, this doesn't scare me as much as it did the last time!) She wants us to do a few stool sample tests - one to test for blood in the stool and another to measure I believe, fat in the stool, basically to check for malabsorbtion. Kara had some blood work done today as well...a full blood count, sed rate, and CRP. This is exactly what I had in mind before her appointment!

We started talking about my frustrations of the eczema, airway problems and GI problems and I stressed how they have got to be all related. I explained my frustrations at Kara's last appointment at home and with that Dr. S. said that its' time to have Kara see an immunologist. I could feel my eyes burn, I could have started to cry but held it back. ALL OF MY RESEARCH HAS PUT ME ON THE RIGHT TRACK!!! I seriously wanted to get up and give her a hug. She was one step ahead of me and in this FPIES world that we are in, that is UNHEARD OF. She said she is fairly certain that everything is going to come out ok from immunology but it is definitely something we need to look into.

Dr. S asked when we saw Allergy last and I explained that we saw Dr. H in May and it was basically a "you're on the right track, come back in a year" appointment. I said I was grateful because she had the RAST and skin prick testing to know how her dairy and peanut allergies are going but other than that, there was no direction. She is going to consult with Dr. H to see if he can help us anymore than that at this time. I also asked if there was any other Allergist that she know of that would be of more help than he is and she said no, he is basically the best around for these types of problems. Whew. We ARE with the best! I hope something good comes out of that conversation too!

Next, the skin. Yep, our GI even talked with us about Kara's skin! How great is that? She asked if we've ever seen a dermatologist and I said no, explaining that our family doctor has helped greatly in this area. We get it cleared up but then it flares again. Dr. S wants us to see a dermatologist now, and one down there, to have our team all together to communicate, and have all the records right there. She picked one, and said not even a pediatric one, Kara needs to see one who sort of specializes in more complex cases, where it's more than just skin that's the problem.

meds work and help the other problems than we follow up in 3 months. Once again, it's going to be busy. I'm anxious to get these labs underway...just waiting for, well, you know...before we can get them to the hospital to be processed! =)

These Days

2011-07-15T22:44:00.000-05:00

Life has been simply exhausting around here these days. June started with prepping for Kara's surgery, the surgery itself with the hospital stay and recovery, followed by the 4th of July and all the festivities surrounding it in our community. In the last week we have been completely back on track, back on our normal schedule. Things should be getting back to normal around here, but they aren't.

Because we can't seem to make it one week without a visit to the doctor for some reason (oh wait! We did it this week!) we started last week out, after the holiday, at the doctor because Kara had an eczema flare that was totally out of control. By the time I decided to make her appointment, she had the inflammation cough again as well. Back on meds we go - two new prescriptions for the skin! If this didn't work (which it has, luckily) it was on to a dose of Prednisone which would have helped the cough as well, but of course only temporarily.

Kara has been completely out of sorts. There is no such thing as a baseline at our house anymore and we have a child who is waking up screaming in the night for hours - mostly two hours every night. She's having terrible tummy aches which is obvious by her crankiness, and other more obvious symptoms. We have a GI follow up appointment on Wednesday morning. Kara has had no new foods since our last GI appointment which was about six weeks ago and has been antibiotic free for a few weeks now as well. After eating peas for lunch one day this week I thought we may be running down the road of another VERY delayed reaction to those but then the last few days she's been on a very basic diet and things still haven't been looking any better.

Our days are consumed with laughing and playing but then just as soon as that starts its hitting and screaming. It's a daily roller coaster of up and down symptoms which tell me that something more is going on. We are getting really good at distraction - last weekend we spent the day out on the boat after an early 10:00-12:00 nap due to a very ornery Kara. She was so happy, swimming in the water but every so often, she'd get out and need to snuggle up, clear that she'd had enough and needed a rest. I'm am purely exhausted because she just wants her Mamma. With all of this happening, life still has to go on. I have a four year old sweetheart who wants her Mommy time that she deserves and a busy husband. I feel the need for a get-away, an additional 3 hours in my day, or a few more arms!

Update

2011-07-10T11:30:00.000-05:00

Well, we (obviously!) survived the tonsillectomy. The best thing I can say about the experience is that I'M SO HAPPY THAT WE NEVER HAVE TO DO THAT AGAIN. It was two really, really rough and sometimes scary weeks but it's over with and she's well healed from it.

We had Kara's post-op appointment last Friday. We opted to have the appointment here, in our hometown because she was back to eating and we knew she could hear just fine (Very well, in fact - she'd cover her ears at all sorts of sounds, like she'd never quite heard them that loud before!) The ENT at the U knows the ENT that travels to our local clinic and he had no problems with this so it saved us a day of travelling. His report was that her ears are CLEAR and DRY and that her throat looks great. We could FINALLY breath a sigh of relief to know that we got the procedure behind us.

Since I last blogged, life has been busy and we've been trying to enjoy summer. Kara is having some problems again, which we didn't anticipate, being that she was on mainly Neocate for over a week but yet she is far from baseline. We had a clinic appointment this week because of this missing baseline again. Her body is inflamed again. The visible is obvious by taking one look at her skin. The less obvious is showing us symptoms - the hacking cough, the urpies, gas, and icky, icky diapers. We see GI on the 20th and with that we are going to be seeing a dietitian as well. In the meantime, I am back to digging, trying to find a connection, trying to find some kind of specialist that can help us put all of these pieces together. I feel like we are back to square one, just waiting for that initial appointment.

I had a mini-meltdown at Kara's appointment the other day. Bring it on, life, I'm one tough girl but the minute I get frustrated with something that I have no control over, I lose it. I started updating Kara's doctor about her last food fail, how she has never quite made it back to baseline from that, how I'm afraid there's more going on in her body than FPIES and I was reassured that we will get this figured out. If we don't get anywhere at her next appointment, then we'll look somewhere else. I'm determined to have my happy girl back.

Today

2011-06-16T14:27:00.000-05:00

Today is day 6 post tonsillectomy. It's been an awful last 6 days with today finally (maybe?) looking up. A lot has happened and I'm going to try and blog about it in parts, as it is just way too much information to put down all at once, especially since I've barely had any time on the computer in the last week and my mind is not working the greatest due to pure exhaustion.

Today I GOT A SHOWER. Without a screaming Kara outside the curtain! I snuck into the bathroom while she was playing nicely with the dollhouse that I brought out to the living room yesterday in hopes of a distraction from all the pain! This was huge! This week I've been feeling similar to the way I felt when I was home with a newborn baby, only this one is 20+ pounds of baby who screams when she's put down and has been in excruciating pain.

Today I LEFT THE HOUSE! I hadn't been out of the house since Sunday, with the exception of a car ride to the ER yesterday (which I ended up turning around and going home). Kara seemed pretty content today so I was on the phone with my mom and we decided to go for a drive and go visit her at work. She works at a resort so we got there and went for a walk along the shore, saw the water, boats, kids (BOY! As she says!) and a few chipmunks. We carried her off and on as she gets tired out really fast. We went back up to my mom's office and Kara got a good drink of water and started fading really fast so we left. It was a perfect outing, nice scenery and just long enough.

Today I GOT LUNCH! I don't know what I've been doing for eating lately - I seem to have no appetite which is just fine with me, I certainly have weight to lose, but it seems our days have been spent in the rocking chair, snuggling on the couch, or in my bed trying to keep Kara content, if I'm not coaxing her to please drink something! We got home and she was insistent on noodles so I started boiling some vegetable broth for some difference in flavor. Kara ate a few noodles, played with a few more and threw some on the floor. She also had a few bites of a jar of apple/blueberry baby food. Baby steps here...this allowed me to put a pizza in and actually have some lunch. It doesn't matter that I ate my lunch while blogging this, I should have said "I GOT LUNCH AND GOT TO BLOG!" :)

Today IS MUCH BETTER THAN YESTERDAY, and all the days prior, but I'm reminding myself it's only 2:30 in the afternoon. When I talked to the ENT nurse yesterday I was reminded that days 7-10 are actually the worst, as the scabs on the throat start to heal. I think we just might get a one day break before this healing painful time happens!

There are two things that stick in my head from our hospital stay.
One is the wonderful resident's words as she was discharging us: "Ten days from now you guys are going to be so happy you did this."
The other is the ENT's answer when I asked how her tonsils looked: "They looked like they needed to come out. Most importantly, we had the sleep study done to prove that they needed to come out."
I needed this for my own piece of mind, I explained to him. I felt better knowing that they actually looked bad as well, so that made me feel like we did the right thing putting her through this surgery, as risky as it was for her.

It's going to be rough but will all be worth it. I'm beginning to see the light at the end of this long, dark tunnel.

The Week

2011-06-08T21:16:00.000-05:00

This week has been trying. I'm not quite sure how else to put it! One minute at a time is about all the faster we can go!

Monday Kara and I hopped in the car for our 2 1/2 hour drive to Minneapolis. We were meeting with her ENT before the surgery to discuss what all was going to be done, what extra precautions were going to be taken, the whole works. It started out with Kara having fluid in both ears - but not infected, yet! We went over her sleep study - definately has obstructive sleep apnea and the tonsils really should come out. We went over the risks and benefits of the procedure and it was decided to have the tonsillectomy done at the same time. After going through information with the doctor, we got other things taken care of with the nursing staff and Child Life. I THINK we are ready. They reminded me to just keep drilling "it" - meaning Kara's previous reaction - into their heads. Every one of them that comes into the room the day of her surgery. It can only help to have everyone that much on board with what can potentially happen.

Tuesday morning I woke up two very tired little girls and drug them out of the house to daycare. It was a terrible, terrible morning. We were all so tired and I was running late so pretty much just dropped them off and left. I was making a mental list in my head of foods for Kara to eat after her procedure throughout the day and decided that I was going to run into town after work to pick some things up, get a book or two to read and maybe something new as a distraction for Kara in the next few days. I had to stop at home quick and my girls were both still so crabby! Brenna was terrible, whining, crying, I left Brian with the girls and was on my way as that was my only night to get things done.

I got home from Walmart and had picked up a pizza on my way home. I got home to find neither of my girls feeling the best. Brenna was laying on the couch, curled up in a ball and they both had temps. Bren didn't touch her pizza, didn't even budge from the couch. Her tummy hurt. The night went on as she whimpered on the couch and her temp continued to rise. She had mid belly pain but no vomitting, diarrhea, constipation, so I really started worrying that it could possibly be her appendix. We got Kara put to bed for hte night and Brenna was sleeping so we just figured we'd keep a close eye on her. At 11:00 she was moaning in pain and her temp climbed to 103 so we brought her to the ER. Three and a half hours later and many, many tests run, we ruled out appendicitis. She has a bad UTI and some other things going on so we took her home on two antibiotics. I found myself snuggling her in the ER wondering if it was going to be possible to get her into surgery, recover and home from the hospital before I had to leave with Kara Thursday evening. Thank GOD it didn't amount to that! We're watching her close but she's much, much better today.

I got up with Kara this morning to get her ready for Brian to bring her to daycare, hoping Brenna and I could get some sleep. I had told Brian she was ready and then stopped to take her temp, thinking she still felt warm. Sure enough, she was over 100 degrees. Great. We have surgery scheduled (and it took a LONG time to schedule!!!) for 48 hours from now. I called the clinic as soon as they opened and got her in right away this morning. She's got a nasty nose, red ears full of fluid and an icky looking throat. She also has some nasty looking blisters on her bottom (have I mentioned how far from baseline she is lately?) and the doctor was pretty concerned at the look of those as well. She is now on amoxicillin again, due to me refusing anything else this close to surgery as well as a prescription antibiotic ointment again. The doctor explained (it wasn't our usual doctor) how she wanted her on a different antibiotic and wanted to give her sulfa. She had a totally valid point and I would have agreed, had we not been two days from surgery. I explained how we have to trial everything, how our GI doctor says no more trials for a few months and to me it wasn't worth the risk. She agreed with me and we started amox again today. I REALLY HOPE AND PRAY THAT IT WORKS and that she is better by Friday morning when we arrive at the U. Do I have to tell them about this recent infection and antibiotics when we get there? We can't put this surgery off any longer! Having the throat and ear problems again is putting my mind at ease a little bit about her having the procedure done.

I'm not sure what's up for going to work tomorrow. I guess it's a really good thing that I got somewhat caught up yesterday. As of now, Kara's temp is still 100. Oh, and she's still awake sitting next to me as I type. With a tummy ache. She's been scratching like crazy and I'm noticing that her eczema is all bright red. I think it's time for some benedryl. Damn it, this better not be a start to an amox reaction now but with our luck this week, it probably is.

Sleep Study Part 2

2011-06-01T22:23:00.000-05:00

We got Kara in the crib and started moving wires and getting her situated. We thought we had her all set up but she started stirring, saw me and panicked. She stood up, crying and I held her and snuggled her. I finally asked if she would lay back down in the crib and I would pat her butt. She did this, rolled over, snuggled in and we stood over her, rubbing her back, patting her butt, consoling her. We'd stop, thinking she was alseep and she's say "Mama?" The nurse said we needed to do this until she went into slow wave, deep sleep and then we'd try and get out of there. It seemed to take forever, but basically we both were in a pitch black room standing over a crib staying as silent as possible except for the pats on her bottom.

The nurse finally came in and we quietly tried to pack things up. At one point, Brian bumped a toy. "Shhhh!" I said! They assured me that she was in a really deep sleep and with that, she didn't even budge! They showed us our arrangements for the night and made us right at home. They treated us so well! Brian and I had a room in a consult room - it had a small couch in it and a pullout chair, all ready to go for us. The nurse said we could knock on their office door anytime in the night to check on her and assured me they'd come get us if they needed us. Since Kara was the only patient that night they even let us in their office and showed us what was going on. Holy cow, 22 leads gives a LOT of info. They had a camera focused right on Kara as well. Pretty cool! I'm glad we got that opportunity!

Brian and I got settled in and I was exhausted. By this point it was almost ten. I had no clue how our night was going to go so I wanted to get to sleep. It had felt like I had slept the entire night when there was a knock at the door. She nurse said she had just woken up so they were trying to get her back to sleep but she was crying for Mom. They said they got plenty of information so if I wanted to come snuggle her, maybe we could get her back to sleep. It was only 3:45!

I got to the room and she was sitting up as they were working on un-hooking her. She was SOOO happy to see me! They said she did so good. She started stirring a little bit and they could see her eyes open and close. Then she seemed to notice that damn oximeter again and that was enough. She was kicking at it, doing anything she could to try and get it off. Funny how with all the wires on her, that again was the only thing that bothered her! We turned her movie on again and snuggled while they worked with adhesive remover and wet wash clothes trying to get her cleaned up. We got her a bottle and again, she refused it, just wanted to hold it. Funny girl. They let us be and I sat with her trying to get her to go back to sleep but she was wired. She started asking for Daddy so I told her to knock on the door and tell the nurses we were going bye-bye. That bought us some more time before waking Brian up - someone had to get some sleep to drive home! They got such a kick out her her. She gave them all hugs and kisses and certainly didn't hold a grudge from the night before! The nurses couldn't give me much info about the study, just let me know that the doctor would be calling me today with the results.

We went to our room and she was so happy to see Daddy! Brian asked about the time and with that we promptly got up and ready to go to beat the morning traffic. We were on the road by 5:00 and home a little after 7:00! Kara did really well, I'm so proud of her. This is working her up for next weeks surgery, that's for sure!

We bummed around today and I had many attempts to get Kara to go to sleep - I was so tired. Any change in my sleep seems to mess me up for days! The doctor called mid-morning. He said Kara had mild to moderate sleep apnea, occurring about six times an hour. He let me know that he is sending the report to the ENT so we will hopefully find out before the weekend if the plan is to take the tonsils out as well or not. If we dont' find out by Friday, Kara's preop with him is on Monday. Surgery is Friday!

Sleep Study Set-up

2011-06-01T22:03:00.000-05:00

Last night was the long-awaited sleep study. On our way down to Gillette Children's Specialty Hospital I received a call that they had a cancellation so we could come earlier than our 8:30 arrival time. We stopped and had a quick drive-thru dinner and luckily I had packed a dinner for Kara. Kara was pretty excited. We told her she's going to the doctor and we played games about how she's going to sleep there in the doctors crib. She thought that was pretty neat and exciting! We got checked in and they took us back right away. We walked into the room and she was so excited to see the crib, she wanted to lay down on it right away. We brought her new lady bug Pillow Pet - her fave, since they wanted us to bring special things from home. She laid down on it and we teased "nigh-night!" to which she promptly got back up!

Kara picked out a Dora movie and with that, sat on my lap. We had three nurses working with us and one of them came back with a big blue fleece tie blanket with Dora on it! She was SO excited to get a new blankie! The volunteers make them for the kids to keep! We visited, and Kara charmed the nurses as they started setting things up. They first measured spots on her head and marked them with a special red pencil. She thought that was pretty silly that they were writing on her - I hope she doesn't think this is ok to do! :) They started hooking her up quickly and she tolerated this for a little while, snacking on her grapes. First they clean the area, then apply some adhesive, then push pretty hard to stick the lead to her head, then cover it with a piece of gauze.

She tolerated the beginning part just fine but she had 22 of them on her head. As they started on the sides and the other nurse started putting them on her legs and chest, she started getting really agitated. It was heartbreaking having her cry so hard. I held her down, Brian held her hand and we tried so hard to console her. I stayed in my Super-Mom Mode, trying to be strong, telling myself that nothing hurts, it's just really scary, but she doesn't understand any of this - she probably wonders often why we do what we do to her!!!

The dreaded pulse oximeter on the toe was the last thing that set her off. She had major problems with this during her scope too - I figured it was because of the painful swelling that she had in her feet. She had a fit and I dont' see how she could remember the scope - she was only 17 months at the time but she sure wasn't happy about it! After that came the most important piece. They wanted to try the piece that goes under her nose. If this sticky white thing with leads on it wasn't going to work they were going to have to put one on that actually goes IN her nose. She had a really hard time with it but by this point, she was hooked up to so many different tubes and wires that there was really no reasoning. We kept trying her bottle hoping that would settle her down and help her fall asleep. She wanted it close but wouldn't touch it!

The final step was to put a wrap over her head to hold all the wires together so she didn't get tangled up in them. It was so sad to see her look like this. I'm having a hard time wondering if we are doing the right thing. Should we just put off the tonsils, what should we do? What is the right thing? It's all out of my control right now and I HATE THAT.

We snuggled into the chair and finished watching Dora. Once Kara was asleep in my arms, we got her up on the crib. Here was hoping for a good night!

Dentist

2011-05-29T23:11:00.000-05:00

At Kara's two year checkup her doctor suggested we get her in to see a pediatric dentist. With all the vomiting and reflux, plus still having bottles of Neocate every day, she was worried that her teeth were starting to look a little opaque, like maybe the enamel was beginning to wear off. The last thing Kara needs is tooth problems on top of everything else that she's gone through. I made her an appointment with a pediatric group that comes to the area once a week - we were fortunate to get her in, in just a matter of days. In fact, they were able to take both girls so Brenna had her first dentist appointment at the same time! (How did she become four already? Where have the last few years gone with her???)

Brian was unable to get work off - with it finally getting nice outside he has been busy. I had my wonderful, helpful cousin come with to help me out, figuring I'd need it. Kara is pretty used to getting checked out and I was most nervous about Brenna. They called Brenna's name and she went back like such a big girl. She got a little weepy, we could hear her a few times while they were trying to coax Kara into letting them check her out! The girls that worked with my girls were amazing. Kara got a fancy pair of sunglasses to put on and they used the brush on her fingernail, counting each one, showed her how they squirt the water - Kara thought this was all pretty cool! Next was getting the chair up high enough and then laying her down. This is when she panicked! We got through it, I held her down, trying to console her and Marie went back and forth between Brenna and Kara. The dentist soon came over and played with her a little bit before we got settled for him to look things over. The good news is her teeth look great! He was very pleased at how well they look for everything she's been through! I explained how we have to hold her down usually to brush her teeth - that morning was especially a battle. You have to have clean teeth before the dentist, right? I held her down while she was screaming on the floor to brush them! Terrible! He said this is typical two year old behavior!

Brenna did ok and then had to have x-rays done. She had a fit. The lady that was doing her x-rays was a little rough with her and I wasn't very happy about that. They are uncomfortable and Brenna was scared to death. I'm SO glad I had Marie there to help me out, but both girls crying for me was pretty tricky! They both got a wonderful review from the dentist, with the exception of the crowding they have in their mouths already. Both Brian and I had major crowding issues and years of orthodontic work so this was no real surprise to me. I guess we better start putting money away for their braces now!

I'm so glad to have that behind us. They both need to go back at six months. Hopefully that one will be a little easier. They explained that each time it gets a little better!

GI Follow Up

2011-05-29T22:41:00.000-05:00

Earlier this week was Kara's six week GI follow up. Dr. S. put Kara on Prilosec her last appointment to see if it would help with her urpiness but wanted to see her soon to see how it was going. My report for her was that we basically have gotten nowhere with trials, let alone trialing the Prilosec!

I began this appointment telling her that we had decided to re-trial green beans after a questionable reaction night and it ended on day three with a full blown FPIES vomitting reaction. We are still having problems from that trial - Kara has been waking in the night screaming and it's been hard to get her back to sleep. She's also had lots of icky post-reaction diapers. I then went on to explain how we couldn't get anywhere with the Prilosec. She'd have it for a few days, do much better but then get so constipated, a symptom Kara has NEVER dealt with!

It was decided that we aren't going to be doing any food trials for the next few months. With Kara's chronic ear infections over the last six months and being off and on antibiotics, her gut is out of balance. She thinks that full rest with Kara's safe foods only, along with Kara's surgery should help her out - the surgery will help with the ear infections so with NOT being on antibiotic we can hopefully find her baseline again. We will be following up with her in two months to see if we can begin food trials again. She's also going to be consulting with Kara's Allergist to see if he has any insight on this as well. I'm not sure what our next step will be if this doesn't work - I'm thinking scope again (UGH!) upper GI possibly, no idea. She did give us a prescription for Zantac now - sort of a step down from the Prilosec so we will try that in the next few days.

I was thinking that no new good trials would be ok since we really haven't passed any foods for a few months. We've done trials here and there but never anything long enough to actually pass. I've given her things here and there to just try once in a while and I almost did this the other day before I remembered that we are on hold from all of this! It's going to be tough, I'm afraid, with summer here. If we'd be out somehwere and there was a new food, once in a while I'd give her something - pineapple for example. Knowing we had nothing else new in her diet, if she had any off symptoms it would be from that. It's going to be a learning experience for us - just like everything else is!

Being at this appointment, I was again, very impressed with Kara's GI doctor. She has come a LONG way with FPIES. Last fall she wouldn't refer to it as FPIES - it was "simply" multiple food allergies, followed by food protein enteropathy. This time she openly called it FPIES and even talked about it a little bit. She said "my other FPIES patients" which caught my attention. I know she sees another little girl who's mom is active in our FPIES boards but she made it sound like there were a few! I asked her "are you seeing a lot more FPIES patients lately?" Her reply "I'm not sure that there are a lot more out there, it's just that we didn't recognize it before." WOW! AWARENESS!!!! This made me so happy to hear that they are finally starting to accept it as an actual diagnosis even though the only way to diagnose it is symtomatically and ruling everything else out!

I've stuck with Dr. S from the U - I've been very pleased with the way that she's cared for Kara. So pleased, in fact, that even though she didn't necessarily believe in FPIES 9 months ago, her treatment wasn't going to make any difference so we've stuck with her. (Remember our first GI Appt? "Your daugher does not have FPIES, FPIES babies are failling to thrive, your child is not failing to thrive." UGH. I still shudder when I think of that AWFUL doctor.) I'm very pleased in how she wants to keep following up with us, not just letting us go at this point. I'm fine with our care plan with her for now and am hoping that in a few short months, we'll be set up to not have a follow up until next years birthday!

Two Year Check Up

2011-05-25T20:45:00.000-05:00

Monday Kara had her two year check up. I'm so happy to announce and could shout from the roof tops that WE ARE NO LONGER ON WEIGHT OR HEIGH WATCH! Kara is about 24 1/2 pounds and 33 inches long. She is stable in the low twentys for percentile on both her height and weight. She's looking great! We no longer have to have a monthly weight check (don't let us kid you, we never had a specific appointment for this, as we've been averaging a doctor appointment at least once every other week lately!) but will do a six month follow up instead! This is wonderful news! Kara is still getting at least two six ounce bottles of Neocate a day, some days more and if she's not feeling well it may be four or five bottles. Neocate is still a large part of her diet!

Kara's skin is the same as it's been - with her recent green bean reaction it's in bad shape. This is nothing new and we have quite the cocktail to help get it under control. The doctor also mentioned her cough and that especially with this time of year, we could be nebbing her with the Pulmicort daily to try and help her symptoms and use the Albuterol as needed.

Kara needs to see a dentist now. With all the reflux and vomiting that's gone on, it was decided to get her in sooner than later, before we have bigger problems on our hands. I wasn't surprised by this as Dr. S, our GI doctor brought this to my attention at our last appointment with her. Kara now has an appointment to see a pediatric dentist tomorrow morning. Her teeth are opaque looking so I'm a little nervous about what's going to happen with this. She offered to refer us to Gillette again but I opted for a clinic a little more local. If she has to have any procedures done, we'll have to go to Gillette or the U but we'll take that as it comes.

Other than that, it was a great appointment. Kara talked quite a bit, and acted her normal two year old self. She is finally on track developmentally since she just started talking. I'm already missing those days when she couldn't talk!!! It's almost more difficult having an FPIES child who CAN talk - makes me feel that much more helpless when she's having problems or crying "No doctor!" in the waiting room at her appointments! I briefed her on what's happening in the next few weeks with all of her appointments and we were on our way. It's a very busy week of appointments, prepping us for a very busy next few weeks coming up!

FAIL

2011-05-19T09:49:00.000-05:00

A few weeks ago Kara, about 3 hours after dinner, Kara started vomiting. I was very suspicious about the green beans that she ate for dinner that night. She had had green beans in the past but we don't eat them and we hadn't had them in a long time. Because of this, I figured we should re-trial to see if they were a true pass or not. I very well could have prematurely called them a pass.

We've had some strange symptoms. Night waking, one rotten diaper per day, but nothing was really clear. The last three nights she's had beans consecutively. Two nights ago she was awake in the night crying. Since Brenna is a bed-hopper and ends up in our bed each night, Brian got up with Kara and took her to B's bed. Kara cried for quite a while before finally settling in. We got to daycare yesterday morning and I explained the circumstances of the night before. With that, Kara had a nice, big, sour burp. I gave the daycare gal a quick report - she hadn't pooped yet but to please let us know if she has a few dirty diapers and if they continue to be "nasty". I called around 11:30 yesterday and she had only had one and seemed to be doing just fine. Hmm. The question continues. Is it the beans? Is it teething? She's been chewing on her hand, way back in her mouth quite a bit. Her eczema is broken out pretty bad, all over her back and tummy as well as her normal problem areas - creases and tops of her feet. Is this just "normal" toddler teething (molars?) behavior or are we working towards a build reaction? Unfortunately, the only way to find out for sure is to keep going. I felt fairly confident that she'd do fine - we haven't had a true food fail since last July when she got so sick from pears!

Yesterday was Kara's birthday. We had an event at the fire hall to attend and a bbq afterwards. I packed Kara's dinner - a hot dog to put on the grill, green beans, a bowl of fruit and potato chips. Her dinner was almost the same as everyone else, yet perfectly safe for Kara, or so we thought. We got home, put our tired out kiddos to bed and soon followed.

I woke up to Kara crying around 1:00 this morning. She was crying pretty hard, and I couldn't seem to snap out of it. I got Brian to wake up and run up to check on her. He hollered in the monitor for me so I followed, to find Kara's crib covered in vomit. Nasty, sour, green bean FPIES reaction vomit. She was ok, just very upset about throwing up. I was going to clean her up at the sink but it was everywhere so I gave her a bath instead. She seemed ok, let me wash her hair, we finished throwing pukey bedding in the wash, getting Kara in new pj's and snuggling her to make sure she was going to be ok. We went to Brenna's bed again. I asked her if she wanted a bottle. Her Neocate usually settles her down, I think it makes her feel good, often times. I was cleary NOT thinking, it now being 2:00 a.m.. We snuggled in Brenna's bed and not long after Kara started puking again. I hollered for Brian this time, and we both held her as she emptied her stomach again. Over and over again until there was nothing left to come out. I kept watching her, watching for signs of shock, making sure she was staying "with us". We've been down this road before and it is one of the scariest things we've gone through with her. She seemed to be doing ok, we did all the clean up again and both laid with her. Kara laid awake in bed until about 4:00 this morning. I couldn't sleep either. She'd hold my hand, snuggle, say "Mama" once in a while to make sure I was still there. So sweet.
This morning I am home with her. Her mood is like being on a rollercoaster. Happy, sad, mad, she just simply doesn't feel good as much as she's trying to be ok. Her face is really puffy, her cheeks are bright red. She's eating and drinking decent so I'm just watching for signs of dehydration, trying to make sure we dont' go down that road. In one of her fussy moments this morning I asked her what was "owie" and she pointed to her ear. Do I dare trust a newly-turned-two-year-old? That'd be all we need is another ear infection on top of this green bean fail reaction.
Bring on the weekend. I'm ready for it.

Upcoming Appointments

2011-05-19T09:22:00.000-05:00

We have a tough couple of weeks ahead with lots of appointments, most of them being out of town. Part of me would like to fast forward three weeks and just be done with it all. The anticipation of it all makes me crazy - I was reading the packet of information the U of M sent to me about Kara's surgery and my heart started racing, the anxiety was terrible and I had to put it away. I'll review it before her preop, or right before the sleep study. I can't think about that stuff right now.

To help me keep what we have, and when, I'm going to blog about it. Hopefully this will help me get my thoughts down so I don't forget anything!

Monday, 5/23: Kara's 2 Year Check: The regular Well Child Check. This will be the opportunity to discuss Kara's (lack of) height. I'm not sure if I've said much about it on here or not but in a matter of a few months, Kara managed to drop from the 25th percentile down to about 2%. The GI doctor didn't seem too concerned so that put my mind at ease but it was something her Allergist was pretty concerned about, even mentioning having her see an Endocrinologist after discussing it with her Primary. In my research and mostly from talking with other FPIES Moms who's little ones are right around Kara's age, it seems to be quite the trend. Roughly between 18 and 24 months it's like they just quit growing, or grow very, very slow. A few kiddos have upcoming appointments with Endocrinology so I'm just as anxious to hear what they find out. There are SO MANY strange connections with FPIES and it has my mind constantly rolling. Other than her height I dont' have any other concerns. In the last two weeks Kara started talking and now it's non-stop. She mimics nearly everything we say and has even picked up on "meanie" and "dumb", no thanks to her older sister! (Dumb, and now meanie are and have been on the "naughty words" list, by the way!) I think she's all caught up on milestones, thank goodness!
Wednesday, 5/25: GI Follow Up. Out of the last six weeks, I dont' think we've been able to give Kara her newly prescribed Prevacid for more than four consecutive days and that was only had 1/2 of the dose. We were definitely seeing an improvement with her constant wet burps, and she hadn't done much of the random vomiting but it was all I could pinpoint to making her so constipated. That is a whole new road that we are NOT used to going down with her! I'd back off, not give it to her for a few days, she'd be much better and then the reflux would come back in full force after a few days of being off of it. It's been an icky cycle. Not sure what is going to come out of this appointment. I am glad that we have it on the books, however, because we are doing a green bean re-trial and it is coming with some very odd results. I plan on blogging about this whole ordeal at some other time, when it's not bedtime and I get some quiet time to concentrate! :)
Tuesday, 5/31: Sleep Study. I don't even want to go there. I'm hoping all goes well and I'm just going to take it as it comes. Gillette Children's worked Kara into the schedule to get in at an earlier date but with that comes a later check in time. 8:30 PM to be exact. Now, Kara goes to bed by 8:00 nearly every night, and wants her crib for the most part. After reading the book they sent us on it I'm SO nervous of terrifying her for life! The nurse that I spoke with let me know they have different ways of doing it on toddlers and it is possible that we can get her to sleep and hook her all up at that point. It was explained that since we are from out of town they will make sure to accommodate both Brian and I. We will be in a separate room from Kara but close, and they will come get us if we are needed at all. It was explained that they don't want anyone in the room because of possible snoring (A yes for both of us, LOL!) and possibly getting up in the night. They don't want any noise to risk waking her up, especially from REM.
Monday, 6/6: Pre Op with ENT, U of M: Dr. Rimmel, the Pediatric ENT that will be doing Kara's procedures, wants to meet with us before the surgery. At this point we will decide, based on the sleep study results, if it will be just tubes and adenoids or tonsils as well. We will discuss her surgery plan - giving her steroids before hand to help offset any possible reactions that might happen and keeping her inpatient for a day after because of her anesthesia reaction after her scope. Kara also tends to get dehydrated so easily so that's another thing we really have to watch with a tonsillectomy.
Tuesday, 6/7: Pre Op with her Primary: The scheduler at the U told me we needed both these appointments, both with Dr. Rimmel and then with our primary but I'm not sure if this is right or not. It seems like they should be able to do it all at at her ENT PreOp appointment but maybe not. Regardless, its' just one more thing on my already too busy schedule! At least we dont' have to travel for this one!
Monday, 6/13: Surgery Day. Ugh. I'm planning on taking a week off of work. The scariest thing is that we have NO CLUE what will happen. She could do perfectly fine, have no reaction what so ever. The scope deal could have been a totally fluke thing. I'm not good about not having control and this is one situation that is going to make me crazy. I may need drugs myself this day! Seriously. Remember me saying how I nearly had anxiety from simply READING about the procedure?

So, there we go. Looks like this summer is going to start out about as rough as last summer did. We are fighters though and will be ok, just please keep us in your thoughts and prayers.

Two Years Old!

2011-05-18T21:24:00.000-05:00

Today my baby turned two. I was anticipating being sad - two years old, already, where has the time gone? Today came with a whole different set of emotions instead. I'm happy - she has turned into the most adorable blond curly haired, blue eyed, chatter boxed little girl. We've come so far and I still go by the motto "Life gets a little easier every day", which was my motto from day one of bringing my new baby girl home from the hospital with a just-turned-two year old at home as well.

Last night I glanced at the clock and the memories of me thinking maybe I should go to the hospital three weeks away from my due date came to me. I was monitored for contractions and the next morning decided that it was time to do my repeat C-Section. Tonight around 5:00 I was thinking back to where we were at THAT time two years ago. I was laying in a hospital bed, unable to move much of my body and in pain. I had no real idea of what was going on, I was far too out of it. My baby was in the warmer still, on oxygen, struggling to keep her O2 sats up. My only thought was "if my baby is going to be transferred out of here, I'm going to find SOME WAY to get out of this bed and go with her." She's been a fighter from the start!

Last year at this time we were a mess! After our horror GI visit at 8 months old, we'd barely been hanging in there. I had just recently weaned her from breastfeeding and we were "experimenting" with some sort of a formula she could tolerate. I knew that at one year we'd have an allergist appointment so we held onto hope. We went from Enfamil to Nutramigen to Soy Milk, all with no progress. Shortly after Kara's first birthday she went on a total elimination diet, which meant taking ALL foods from Kara and finding a baseline on Neocate. I'd never even HEARD of baseline before, let alone had any clue of how we were going to manage. What was to come were the best weeks Kara has ever had! Neocate, followed by corn grits and kix cereal became her only food, slowly having bananas mixed in for some flavor. We have, in the last year, added 18 foods to Kara's safe food list. Each trialed roughly a week at a time, sometimes shorter, sometimes longer. It's been a long year, full of ups and downs but we have made major progress looking back at where we have been!

Kara Lynne, you will never cease to amaze me. Life is sometimes a struggle but in my eyes you are nothing but a fighter. You put a smile on my face every.single.day and my life is that much more complete with you in it. I love you Baby Girl, my Little Diva!

Birthdays!

2011-05-15T13:50:00.000-05:00

April and May are full of birthdays in our families and yesterday we celebrated Brenna and Kara's birthday's together since they are only ten days apart. I was so excited for Kara to have a birthday cake! I have a friend who is an AMAZING cake decorator and she agreed and was 100% willing to make a cake that would be perfectly safe for Kara! We did a lot of messaging back and forth, many ingredients list checking and found a dairy free cake mix. Since Kara can have eggs, that worked out fine and her safe oil is canola. Perfect! Tara made a frosting for Kara out of her dairy/soy free "butter" spread and she does fine with dyes (so far!) so we did another check and double check of the ingredients in that, and it all proved to be safe!

Kara, our little bug, had her very own birthday cake! She loved her cake so much that she wouldn't even look at the camera and in true almost-two-year-old fashion, never sat still for one decent picture! I'll give it a shot on her actual birthday I guess.

Balance

2011-05-03T22:08:00.000-05:00

We've had a busy few weeks with appointments and decisions to be made, as well as Kara not feeling well again. I'm having a hard time balancing work and the never ending care of a child with health problems. I'm struggling with being fair and having the time to give to my curious, wanting to help with everything, sassy, almost four year old as I'm overwhelmed with life as it is. I'm struggling with the balance of getting everyday things done around my house as I have an almost two year old mommy's girl that just wants to be snuggled.

Thank goodness the sun is finally starting to shine and it's starting to warm up. I'm hoping that with spring hopefully finally here things will start looking up. I know we have a really busy and stressful next 4-6 weeks ahead of us with appointments but I'm hoping now that we are getting it all on the calendar we can go back to day to day life instead of not knowing what the future is going to bring. I HATE not being in control and need to get back to the balance of my life that I thrive on.

Sleep Study Dilema

2011-05-03T21:17:00.000-05:00

Yesterday I was awaiting an important phone call from Gillette for Kara's sleep study. I walked out to my car on my break at work, and my phone (that has no service in my office!) picked up a voicemail. I quickly listened, writing down the message on the sticky notes I brought out with me. June 14th, the first available date, is the day they had her scheduled.

I instantly felt defeated. We can't schedule the surgery until she has the sleep study and just on Friday we were back in for both ears being infected and now we are still watching for symptoms from the antibiotic.

I wasn't sure what to do first. I called the scheduler at Gillette back, no answer. Next I called the assistant who transferred me to the Nurse Coordinator. I left a long, detailed message explaining when they could get Kara in for the sleep study, that she has yet another ear infection, and is on more antibiotics. I asked if we could forgo the sleep study and forget about tonsils if that's what the doctor needed or if he would just take the tonsils, since they'll probably have to come out eventually anyway.. I waited not-so-patiently for a call back.

About an two hours later my patience got the best of me. I called the assistant again, re-explaining our situation and she transferred me to the triage nurse. The nurse was kind, I explained my thought process and exactly what I wanted from the doctor. She let me know he was in surgery today so they will talk to him tomorrow afternoon. I thanked her and asked for the assistant once again. We can get in for surgery as soon as May 23rd if he'll let us bypass the sleep study.

Without going into a huge explanation of my thought process on this, I weighed everything out trying to decide what was right. I also looked at the explanation booklet Gillette provides to children having a sleep study done. As soon as I was got through it I was sickened. Kara cries if she has to have a bandaid on! I think that last hospital stay wrecked it all for her with her sore, swollen feet hooked up to the pulse oximeter on one side, the IV in the other. Putting her through something as scary looking as this, even though it's painless breaks my heart!

Brian and I discussed our (lack) of options last night not real sure what the heck we should do, or what the doctor would even let us do. It was a waiting game until today.

Third Times a Charm

2011-05-01T16:18:00.000-05:00

Because two doctor appointments weren't enough for this week, we went in for a third on Friday.

Kara was pretty fussy when we got back to reality on Tuesday night and her crankiness continued through the rest of the week. We kept it in the back of our heads that she had that fluid in her ear and by Thursday night I was ready to bring her to Urgent Care because she was SOOOO crabby. She wasn't acting sick just really ornery and wanting to be held. I was planning on going to work on Friday to make up some time, but plans changed, as they often do at the spur of the moment lately.

Kara was up all night coughing Thursday night. I felt so bad because it's such a nasty, dry cough and it sounds so painful. Before she had even woken up, I decided it was time to bring her in and that we wouldn't be following with our plans for the day. We got an appointment right away Friday morning, and with that, found that Kara now has an ear infection in both ears. Her cough is a nasty, inflammation cough. We are keeping up with her nebs, the albuterol and budesonide (Pulmicort) and she is actually asking to take them, like she is finally noticing that they help her out and aren't just there for us to torture her with. It's kind of sad, in a way, but much easier than the two of us trying to hold her down to Neb her!

Kara is now back on Amoxicillin. So far it's going decent, just causing some slight gut issues and I'm hoping that we can continue it. We are aiming for ten days but need to get a full five in her for sure and hope that it clears the infection. By this afternoon she seems to be feeling better so hopefully she doesn't slide into a GI reaction and spend the rest of the week sick after one day of ear improvement!

When it rains around here, it pours.

Ear, Nose and Throat

2011-05-01T16:03:00.000-05:00

Tuesday was our long-awaited ENT Appointment. At Kara's Allergy Appointment on Monday the Allergist said that Kara did have some fluid in her right ear. I was REALLY thinking and hoping that this extra day off, day spent in the cities at another appointment was going to be nothing but a waste of time since she's been ear-problem free for a little over a month! This was not really what I wanted to hear but at least the big appointment was just the next day.

We got to the U of MN and checked Kara in for her Audiology Appointment. They did a hearing test and then another test to measure the fluid amounts in her ears. The hearing test is NOT the easiest test to do on an almost two year old! She had me a little worried because I could clearly hear some of the noises they were playing and Kara wasn't responding by the end of the test - the whispers and things like that. The Audiologist assured me that she did perfect in the beginning, but in true two-year-old fashion, quit playing the game about half way through!

With that, waited for our ENT appointment. We seemed to have to wait for an awful long time and Kara was getting very impatient, not to mention, tired! We settled on a bottle about the time the resident came in. She took Kara's full history, finding it interesting and asking many questions. She did a quick exam, finding the fluid in both ears and went to get the doctor.

We spoke about Kara's ear fluid and infections that's been a constant since about December. He said she is definitely right at the point of making a decision on getting tubes put in, but we could wait it out another month or so to see if she does get better with the weather. Brian and I discussed ahead of time that we would at least ask him about Kara's adenoids. Brenna, Kara's older sister, had her tonsils and adenoids out when she was two years, four months old, a big decision that we had to make but since making it, she hasn't been sick a single time. He was curious as to why we did hers so early and when we described what the ENT told us after Brenna's procedure, he checked her throat out as well. He decided that he would do tubes and adenoids for sure and then we went on to talk about her mouth breathing, snoring, basically all the same problems Brenna had except for the chronic tonsillitis. This is where the conversation got confusing, and a bit overwhelming.

This is what's going on:
If we are going to put Kara under anesthesia again, we should find out for sure if her breathing is causing sleep apnea and get those tonsils out right away as well if she is having sleep apnea. If we don't do this, there's a good chance that in the next six months or so she could need to have them out which would mean putting her under anesthesia again. We are waiting on the scheduling of a sleep study at this point, which we will hopefully hear on tomorrow so we can get these things on our calendar. The sleep study will be done at Gillette Children's, as this is one of the things they specialize in. (When we are finished with all of this FPIES business, I swear, we will have been at every hospital/clinic in the metro!)

For those of you that weren't following last October, Kara's scope caused a reaction of some sort, and because of this, she's a high anesthesia risk. This is why this non-invasive procedure is being taken so serious and we are doctoring at the U of M for this as well. These are the blog posts about that experience: Phase 2, Inpatient, as well as a few others in the October 2010 blog archives. Basically, after all of this, Kara had a Holter Monitor, a Cardiology Visit, another EKG and we still don't know exactly what happened. To be on the safe side, when Kara has her ear tubes placed as well as whatever else is decided, she will have prophylactic steroids to (hopefully!) offset any chance of reaction as well as be admitted to inpatient upon the surgery so we aren't hanging around in Phase Two again, wondering what the heck is happening.

It looks like May is going to be a busy month. I'm ready to get the show on the road so we can enjoy this summer!

Update: Allergy

2011-05-01T15:24:00.000-05:00

There was some confusion with my Allergist post and I need to clarify some things regarding Kara's dairy allergy.

We were told that the RAST blood test numbers can range from .01 to 100. Kara's level is a 1.75. On a scale to 100, that's very minimal. She did have a positive skin prick test but there's a good chance that she could be able to handle dairy in baked foods, so his suggestion was to trial it in a piece of bread. It is nearly impossible to find a safe bread for Kara anywhere within a 60 mile radius. When I get to Maple Grove, two hours away, and IF they have her bread in stock, I buy a few loaves and freeze them. Bread is a rare commodity for Kara. So, basically I would use my discretion as I have with her and the minimal amounts of soy oil that she gets in her diet.

Our Allergist said IF she reacts, it will most likely be an FPIES reaction to dairy, not that she'll have an IgE reaction, which is a "typical" food allergy reaction. So, it's a shot in the dark, as all of our food trials have been. Dairy is on "the list" but so was chicken, eggs, and a few other foods that she's passed.

When the time is right, we'll trial dairy in the form of a piece of bread and be very careful, watching the clock that first day and watching for build reactions as the days pass.

Allergy Update

2011-04-28T20:25:00.000-05:00

Monday was Kara's follow up allergy appointment.

We arrived a little early to Maple Grove and met Jill and Brynn, another FPIES Mom and daughter that we have become good friends with. We walked through Trader Joe's which is conveniently located just around the corner from our Allergist's office. Brynn is about a year younger than Kara so we have a little more food experience than they do. We did a little grocery trip, showing her some possible foods that could potentially be "Brynn Safe" down the road. We got in the car and Kara started crying, a painful cry, saying "poop!". We got the car parked and I quickly got her out of the car, checked the back of her diaper and she was clean. I was quite confused as she was very upset and seemed to be in a lot of pain. On our walk in and during our wait in the lobby and bathroom before her appointment, Kara cried in pain as we changed diaper after diaper. Five episodes, fifteen minutes. I was panicked, scared, not too sure what to think about what was happening. The receptionist at one point asked if she was going to be able to have her appointment. "Oh yeah - this all stems around her allergy problems!" Kara was wiped out by the time this was over with. We got roomed, got her vitals all taken and the doctor was in soon after.

I was so thrown off by the episode that had just happened that I just felt frazzled when he walked in. I quickly went into the episode that we just witnessed, explaining that I had NO CLUE what could have caused it. He reassured me that these things will happen, probably more and more as she gets older and more independent. We can't watch her every move, and being a toddler, she's going to get into things that she shouldn't have. Accidents can happen and will...

He is very pleased at how well Kara has maintained her weight. He did seem rather concerned about her lack of height, something we will be discussing with Kara's primary doctor in the near future. He's impressed with the diet that we have for her and agreed with what we are doing with the Neocate, limiting it to morning and night.With that, I showed him her RAST scores. Both peanut and dairy had rose a little bit since last year but nothing too alarming. He decided to skin prick test her as well and Kara was not too happy about that! Those results showed positive for dairy and negative for peanut. Even though it was negative, I still dont' think we'll be trying peanut anytime soon! As we were talking about her dairy allergy, he explained that it's not the dairy "allergy" that he's concerned with, it's that he's afraid she's going to have an FPIES reaction to dairy and that's the biggest reason why we are avoiding it. He did say that we could trial cooked dairy, as in a bread or muffin very carefully and see if she could tolerate it like that. Something to think about down the road, that's for sure!

Dr. Helm said he is confident that Kara will outgrow this someday. He said he hopes that when Kara is sixteen, we'll be thinking about how long it has been since she's actually had to see the allergist! That was hopeful. We confirmed that we will not be trialing any of Kara's FPIES triggers until she is at least four years old and to follow up again next year unless we have problems before then.

Yay for a positive appointment!

Raising Awareness

2011-04-24T18:09:00.000-05:00

Our Brainerd Dispatch article has been published! We are going to be featured in the April Issue of Health Watch Magazine in the Brainerd Lakes Area! It is available online now. Click HERE to be directed to it and it is on pages 16 and 17! You'll have to click on it to enlarge it - it's pretty small.

Our writer and photographer did an amazing job. I was fine to begin with but as the days went by I got nervous about our story being told. Rest assured, I'm very happy with the way it all turned out. Kara looks like an extremely healthy toddler, I always say, it's her insides that are a mess. I'm sure many people that know us, haven't had a clue that our littlest has these health problems. I hope this article does what I wanted it to do - raise awareness - for us in the community, for the medical profession in the community and for future FPIES families struggling like we did originally - may they not have to have quite the struggle that we have had.

We have made great strides across the nation with FPIES awareness, all in less than a years time. I have definitely done my part, advocating Kara's life to my fullest potential, and still not feeling like I was doing enough. I've taken phone calls with new mom's who have sent me messages stating their child just vomited profusely after eating rice cereal, and upon googling, came across my blog. Many emails from Moms and have most recently started an FPIES Midwest Facebook Group - vent away Moms, we are all ears! :)

While I was going through the posts trying to write our insurance appeal, I was reminded of where we were last July. Struggling is an understatement. I came across THIS blog post, a post that was written at one of my lowest times in our struggle. This was my final quote "I wish there was someone in this state, or even area that has had luck with a facility and dealing with FPIES because Kara, and others are struggling." Looking back at this post, written on August 23rd, is huge for me, to realize how far we've come!

The Ba-Ba

2011-04-16T07:26:00.000-05:00

Oh the bottle. That dreaded thing. As I've previously mentioned, I had Brenna off the bottle by shortly after a year old. In fact, at a year was her last daytime bottle and the evening one probably drug out to about 14 months. With Kara, I have been very hesitant to remove it because she simply won't.drink.her.neocate.from.anything.else.period.

ABSOLUTELY REFUSES.

So, that has resulted in the bottle. Often. Fussy baby wants a bottle. Dinner is in an hour, but just give her a bottle, now fussy baby won't eat her supper. A car ride over lunch? Give her a bottle to tie her over. It's gotten quite ridiculous, I must say.

Since the GI doctor brought up getting the bottle away from her, I figured we better start. We have a new baby in our family, a new nephew/cousin named Baby Michael that we've been talking a lot about this week. We put all the bottles in a bag, telling her we were giving them to Baby Michael. She was NOT happy. The other morning she woke up and asked for a ba-ba. We let her know what we did again and she cried NO NO NO I put her Neocate in a sippy and brought it out to her, where she was snuggled up in the recliner. She wouldn't take it, pushed it away, cried for the bottle. I tried to pretend I was drinking it, and how yummy it was, then tried to up it up to her lips, and she again pushed it away. I gave up and continued to get ready for work.

Kara moped around the house crying for her bottle as we got her ready, Brenna ready and ourselves ready. The girls were having another day at their new daycare and this day was NOT off to a good start. Finally Brian and I decided to just give one to her, start by just cutting out the daytime ones but still give her a morning and night one. He made a production out of opening the sippy, showing her the "milk" and then pouring it into the bottle. She grinned, took the bottle, and laid down on the floor to drink it, perfectly happy.

She went all day at her new daycare with no bottle. I explained how there was one at the bottom of the bag but that this was a good opportunity to ditch it, if at all possible. Easy enough, there was enough distraction. However, for the first hour she was home she moped around the house asking for one. We did not give in.

She went to bed tonight with NO bottle. She didn't even ask for one, which made things simple. It's going to be a big change but I'm hoping we can do it. My original plan was to hang on to it through her ENT appointment, in case she needs tubes put in so we have another way to get fluids in her afterwards because of her dehydration issues but now I guess we are starting now!

Gastroenterology Appointment

2011-04-14T20:59:00.000-05:00

Yesterday was Kara's GI appointment. She was such a trooper and makes me so proud to be her Mamma! We arrived at the U of MN an hour early so we took our time walking through the lobby. Kara immediately spotted the escalators which she remembered from the Arizona trip and kept saying "me! me!" We got quite a few looks and many compliments on Kara's pure adorable-ness! We took a few rides down and then up again before heading up to check in.

We got to the Pediatric Specialty Clinic and checked in. I mentioned how early we were and was told that's ok, we should get called back soon. Huh. Oh well, anything to get me out of that tiny, cramped waiting room. I sat down and quickly remembered how much I hate that place. (the new clinic is opening on May 1st. The current one is old, tiny, dingy and has a cramped waiting room with a large variety of children and parents in there. It's just uncomfortable for me.) Minutes later, we were called back.

Kara is usually pretty good about getting checked out at our clinic at home because she knows the routine. Here, I had no idea what to expect. She was a little timid due to being in an unfamiliar place but stepped right onto the scale and then cooperated as we laid her down to get an accurate height. The nurse told me that we were going to try and get her blood pressure. I laughed - Good luck, I said! She cries when you put a bandaid on her! I sat Kara on my lap and she held her arm out. I waited for her to scream, ready to comfort her and she was a perfect patient - not a peep was made!

The doctor came in and we discussed at length Kara's croupy cough that she's struggled all winter with. I explained how she's been on nebs and nothing seems to get rid of it all the way and that I was thinking maybe it was more reflux related than anything. Her cough is much worse in the evenings and night. I also talked about how she has these icky, wet burps all the time, seeming to throw up a little bit in her mouth quite often, then swallow it again. This has slowly become more and more of the norm lately. She's also had some strange, random vomiting episodes. Because of this, Dr. S wants her to trial Prilosec for six weeks to see if there is any change. She researched the ingredients for me and it looks to be safe, but with Kara, we never know. We are to slowly start trialing it - 1/4 of the dose the first few days, then 1/2, slowly making our way to the full dose every morning. Now I just have to wait for a morning to be home with her to get our start! (No Mommy Day tomorrow, as I had to take yesterday off for the appointment.)

Dr. S has always referred to Kara's FPIES as "multiple protein intolerance's". She's really come along in the last six months, saying "FPIES" herself when talking about Kara. She also listed FPIES and GERD as her diagnosis on her follow up sheet. This made me SO HAPPY! Our attempts to raise awareness of FPIES is working!!!

We talked about Kara's growth...or lack of...and she said she isn't concerned. She stressed to me that Kara looks great, that I am doing a wonderful job, we have nothing to worry about right now as far as her growth is concerned. She said she understands what a daily struggle it is but again, we are doing great. (Me, grinning ear to ear.) She did say we need to cut Kara down on the Neocate and get her to eat more foods. Oh, and getting rid of the bottle goes right along with that. (That already deserves a post of it's own, and we just started to try!) She explained that if she is refluxing, that could eventually wear down the enamel on her teeth causing more problems that we really don't want to be dealing with. we need to make sure we are brushing her teeth or at least rinsing her mouth out each time she eats or drinks. Drinking the bottle of Neocate as often as she is is only going to contribute to that problem. One of these days we'll be done with it...one of these days...

We got Kara up on the table where she proudly pulled her shirt up to show Dr. S her belly and her beloved "button". I'm always amazed at how cooperative she is despite everything she's had to go through. Our appointment ended promptly at the time it was supposed to begin. I couldn't believe our luck yesterday, in and out so quick, a good appointment and a happy little girl. We left, making a follow up appointment in six weeks to discuss the reflux again. On our way out the door, we had to ride the escalator again. Twice this time, since she was such a good girl!

Another Reaction

2011-04-11T21:55:00.000-05:00

Last week (last week? the week before? My days are all running together!) while the dispatch interviewer was here I made a few comments that stand out in my head. "Random reactions, episodes that will happen and we may never know what she got into; Sometimes it's day by day, other times it's hour by hour." She left and we made a quick dinner, eating later than usual.

Kara got a little fussy after dinner but it was late and she was out of her 5:00 dinner routine. Brian ran up to the fire hall to pick up some things as he usually does Monday evenings and I set a fussy Kara in the chair with Brenna to drink her bottle hoping she'd settle down. I had just sat down on the couch when Kara made this horrible, burping sound and Brenna jumped out of the chair faster than I would have though possible. Kara cried and I ran to get her. I sat down, holding her out as she vomited. It kept happening, over and over again. Brenna was crying, Brian was gone, my heart was racing. I don't know how long this lasted, it was probably pretty quick but I quick grabbed my phone and called Brian. No answer. I knew he was going to be at the hall for a while. Debated for 1/2 of a second to call 911 but then called my Mom, who lives a mile down the road. She answered, I said "Kara's puking, I need you." and hung up. Kara stopped throwing up and I started cleaning her up as my mom got to my house. She perked up quite a bit seeing her Nonna at her house, Brian got home and we go the floor all cleaned as Kara played and entertained. Again, we didn't need to bring her to the ER but her face was as white as a ghost through all of this and hours after and she had us on our toes, ready to run if needed.

We don't know for sure what caused this reaction but I have a slight suspicion that it was green beans. Beans aren't a common veggie that's eaten in our house and I don't remember the specifics of how long we trialed them. I'm afraid that this could be a build reaction, but unfortunately, the only way to know is to trial them again.

I hate this game.

Daycare

2011-04-11T21:30:00.000-05:00

Three weeks ago this week we received a phone call from our daycare provider. Miranda has done our daycare since the first day we needed daycare when Brenna was three months old. We lucked out when I was about five months pregnant with Brenna, getting into her daycare and once Kara was born, continued to send our girls to her house.

Miranda truly cares for our girls as if they were her own. Upon Kara getting so sick and her second six months of life where every day was a question, Miranda was with us through it all. We'd share with her how she'd been up all night screaming in pain, we'd have her watch for dirty diapers and to give us a report of what they looked like. For a while, she would put her dirty diapers in a plastic bag and send them home for me to investigate myself! (YES, we really HAD to do that. Gross, but it is what it is...any FPIES Mom will agree with me on this one!) She was on the phone with me, taking care of Brenna while Kara was in the hospital, not coming out of the anesthesia the way she should be and she's been with us on each and every food trial we've gone through so far. She's seen Kara as the tough little girl that she is despite everything she has been through. She watches Kara like a hawk and even changed rules around the daycare to cater to Kara's safety.

Three weeks ago we received a call that she has taken a new job and will be quitting daycare. This Friday is her last day.

The last few weeks have been filled with every emotion possible. The first few days had me crying my eyes out every day. I couldn't imagine how anyone else could take care of Kara in a daycare the way she takes care of her. I imagined a little toddler sharing a cookie with Kara and getting her sick, her getting a hold of someones milk sippy, Kara reaching over and grabbing food on the plate next to her. Where Kara has spent her daycare days so far, the kids know her - they know she has different food, they know she has a special sippy, they know and it's natural to them. It made me panic but I realized I had to let go and start to trust.

We got in with a wonderful provider with about as many years of experience as I am old. We visited as a family and she took the girls with open arms, the girls walked into her home like they belonged there. On a recent Mommy Day we also went and spent a few hours while the daycare was open. Again, the kids adjusted wonderfully and our new provider asked many questions and was very interested in Kara's diet and what she could do to accomodate her. Last week, I brought the girls for a trial day and went to work. They gave me their usual hugs and kisses and ran to play with their new friends. They had a perfect day.

Our life has had a way of working itself out lately and I'm grateful for that. With a crazy week this week, tomorrow will be Kara's last day there and Brenna will be there on Wednesday. I'm really trying not to think about the end but instead looking into the new change that next week will bring.

Time to Blog

2011-04-11T21:04:00.000-05:00

My head has been full lately. So full that at times, I'm not sure if I'm coming or going. I really need this attention deficit to settle because I have so many things that I need to do, or have started but then have become so overwhelmed with everyhing else that I do nothing instead. The news last week of Kara's formula being covered has allowed me to step back and take a deep sigh of relief. The rest of the week was spent relaxing, getting outside, going back to the things I used to love to do - crocheting, reading, playing outside, yard work, THANK YOU SPRING! It was a long winter and with the challenges we've had with Kara's health and I'm glad to see daylight again.

My list of blog posts in my head keeps growing, and growing and growing. I need to find the time again to keep this blog going. It's most important for me - it serves as a diary of sort, and a time line to look back on what happened and when it happend. I counted on this especially when working on the insurance appeal. My goal for the next few days is to catch up - we have a busy month of appointments and I need to get all of this other stuff documented before it all leaves me!

Neocate: Three and Final!

2011-04-06T19:04:00.004-05:00

Our formula battle has been stressing me out, to say the least. We have too many things going on right now, that I may get the time to blog about some day but this one really had me worried. Finances are getting out of control with medical bills at 18 different providers (that may be a slight exaggeration but it sure feels like it!) and many upcoming appointments, which means traveling expense, meal expense and time off work. Top this with the almost $3,000 formula bill lurking over our heads and we were starting to panic.

Brian took our appeal packet to the post office on Monday afternoon. I was figuring it'd be a minimum of two weeks before we hear anything back. I work in medical billing so I know how these things can go. I decided it is what it is and to just relax until we knew either way. In the meantime, I've watched our dwindling formula supply as Kara asked for another bottle.

This morning, I was busy at work when an email popped up on my screen from our insurance representative. Her and I have been on emailing basis throughout this process. The subject was "KARA" and inside it said "Will you please call me when you get a chance." My heart absolutely sunk. I wasn't able to call right away but within minutes I was able to get on the phone. She said "I just want to let you know, instead of making you wait, that it was decided that Kara's formula will be covered." OH MY GOSH!. I nearly started to bawl on the phone! She went through the details of how they decided it was something that they shouldn't even second guess, covering it would be the right thing to do. I asked if it was something they were going to put a limit on, like six months of coverage, and she said no, they are just going to cover it as it comes. I thanked her, thanked her again, and yet again. I told her she has no idea how much this means to me. I got off the phone teary eyed and shared my joy with a coworker. This was going to be a wonderful day, things are looking up!

As soon as I pulled myself together, I called North Central Medical Supply to talk to our biller there about our news. She is getting it all together and shared in my joy. They have been absolutely wonderful for us to work with, letting us pay as we have the money to pay and hanging in there with us as we figured this formula battle out. I often remind myself of our beginning battle of even trying to find a provider to ORDER it for us. We couldn't have gotten more lucky with who we have!

I hope this is the last post I have to write about formula - at least until I can write the post stating that Kara is DONE with needing Neocate!

Neocate Coverage: Two

2011-04-03T19:32:00.000-05:00

I have our Neocate Junior Insurance Appeal ready to go in the mail tomorrow. Many events have been going on, on top of the procrastination of getting this done. I have been watching our supply of formula in the cabinet dwindle as Kara has been drinking a lot more formula lately from not feeling well, knowing that I HAVE to get this finished.

I wrote a letter, from the bottom of my heart, explaining what Kara has gone through from birth, to diagnosis, to today. I included all the letter that her family doctor wrote for us, her prescription, her ER letter, and all of her medical records from our clinic, hospital, allergists, and gastroenterologists. I also included some documents on FPIES, and copies of the MN State Senate info on amino acid formula coverage. I am keeping my fingers and toes crossed, praying and asking everyone else to do the same so we can get insurance coverage for her formula.

French Fry

2011-03-28T22:26:00.000-05:00

Yesterday we noticed that Kara had a sudden flare in her eczema. Patchy, almost hive-looking spots showed up all over her feet, legs, belly, and she looked puffy. Brian and I wondered what it could be from all day. We were at a family dinner last night commenting on this and found out that Kara got a hold of a DQ french fry the other night. Potatoes are safe for Kara so Brenna was asked if she could have french fries, to which Brenna said yes. Apparently Kara wasn't too fond of it so she didn't finish it. Brian and I looked at each other - question answered! No wonder she broke out. Now to figure out what is in the french fries that she was reacting to.

I did a search and found that they don't have dairy in them but do have soy oil in the coating as well as obviously being fried in soy oil What I couldn't find is a list of ingredients, as far as what the coating might be. I have a resource, a friend that owns the DQ in town, and she is always interested in how Kara is doing. I sent her a message today and the results were, I must say, a little worse than I thought they'd be. RICE FLOUR - this explains her reaction to two little bites of a french fry. THANK GOD she didn't have a full blown reaction to that small amount!

In the News

2011-03-28T21:18:00.000-05:00

A few weeks ago, this story was featured on abcnews.com. This was amazing recognition for the FPIES community and only the beginning of news stories written on FPIES families all over the country.

When this story appeared, I sent it to our local newspaper and let them know that our Kara suffers from the same thing and a little bit about FPIES. Shortly after I received an email asking me if I'd be interested in pictures and an interview.

Tonight was our interview. The girls seemed pretty fascinated, sitting right at the table with us as we talked, then my Mom came over for a distraction and took them up to play. I sat and told our story as the reporter took notes. Whew - we've had quite the battle when we started from the beginning!

The photographer got there and we went up to the toy room to see the girls. Kara was a ham for the camera. It was so cute! He took shots of Kara playing, Brenna and Kara, our family, seeming very interested in our story as well. We came back down and finished up our story. We were doing so well but the break totally made me lose my whole train of thought and I couldn't seem to get things together afterwards. I was so confident before then so I think it's all going to be ok.

I'm not sure what part she is going to really focus on our story, there is just so much to it now but I am so excited to see what she comes up with! She was shocked at our dismissal from physicians in the beginning calling this gastroenteritis! Oh, the things we've been through in this FPIES life! We found out that our story is going to be printed in a special section they do once in a while called "Health Watch" and should be out there around the end of April.

I'll keep ya'll posted! =)

Neocate Coverage: One

2011-03-18T09:07:00.000-05:00

This post is one I meant to write about the other night, before all the sickness hit our house!

We switched insurance at the first of the year. Same company, only different group. Brian was offered insurance through his new job and it's a wonderful policy, one that we pay 1/4 of the premium that I paid with my insurance. All around it's a much better policy. Or so I thought.

I knew the fight I had to put up to get Kara's formula covered with the first company but that was nothing compared to what I'm having to go through this time around. Our original denial was something along the lines of "this is a non-covered benefit". This resulted in phone calls back and forth with the medical supply company and our insurance group. I had Kara's doctor write a letter and in this letter it explained how Neocate Jr is Kara's main source of nutrition and right now we are looking at her being on it for another six months before even beginning to think about stopping it. I sent this letter and the original script for the Neocate to the insurance company. Not good enough. It's non-covered, they can only process claims that are covered and it would need to go through the review board.

I emailed the drug rep from Nutricia and explained our situation and wondering if he could send us some more samples. We have some to get by, for a little while but anything could help, was my thinking. He emailed me back telling me that they are very limited to the amount of samples they can send out but did put two cans in the mail for me. He gave me links to some resources on the Neocate website - an example letter for the doctor to the insurance company and a program that they have for assistance, if all else fails. I checked this program over, emailing him back with my questions - We don't qualify for MA, we know this, so do we really have to have a denial? We don't qualify for WIC, we were told that when Kara was first prescribed Neocate, do we still have to apply? He promptly emailed me back apologizing because the assistance program is only for Neocate Infant. They currently have no assistance for anything but the infant. I was immediately irritated. How does a family afford this? Our monthly formula bill, before insurance, is 2000-some dollars. We have to pay about $200-$300 of this because of co-insurance, with our old policy. Also, what do families do that simply CAN'T afford this? It's not really an option at our house of whether or not Kara should be on it. She's on a plateau for weight and height, so we are somewhat back on weight watch. With her recent sickness I'm sure she's only lost more! I'm determined to figure this out.

I went back to scouring the Neocate website and anything else I could find. I knew there were MN State Statutes out there that it was covered under certain diagnoses and Kara's is one of them. I went to THIS website, Childrens Magic (Milk Allergy and GastroIntestinal Coalition) and found everything I needed. Here is the MN link and here is a link to the listing of states with elemental formula coverage for those interested that don't live in MN.

This is written right from the bill:
Required coverage for amino acid based elemental formulas for certain conditions. (a) Every policy, plan, certificate, or contract referred to in subdivision 1 must provide coverage for amino acid based elemental formulas when ordered by a physician for diagnosed cases of cystic fibrosis; amino acid, organic acid, and fatty acid metabolic and malabsorption disorders; IgE mediated allergies to food proteins; food protein induced enterocolitis syndrome; eosinophilic esophagitis; eosinophilic gastroenteritis; and eosinophilic colitis, when those conditions are diagnosed by an allergist, gastroenterologist, or pediatrician. Coverage of amino acid based elemental formulas for enrollees diagnosed with an IgE mediated condition is limited to enrollees age five years and under.

Perfect, right?! No problem. I emailed the insurance rep all of this information stating I can send her the exact links of even (Insurance Company's) letter from their Executive Vice President and Chief Medical Officer stating exactly what the letter says, offering a link to that as well. I was told that our group is self-funded therefor they are federally mandated, not state mandated. I need to gather all the information I can and write a letter to the Board of Trustees to be reviewed.

And so it begins. I have my work cut out for me.

Night Owl

2011-03-16T04:04:00.000-05:00

It's been a long night. When we went to bed last night, Kara was tucked in nicely, sleeping sound. I couldn't fall asleep so ended up being up until 11 which is WAYYYY past my bedtime on a "work night"! Around 12:30 I finally got up with Kara because I'd been listening to her fuss and cough more and more. She snuggled with me for a little while, I took her temp, and it was 100 degrees. Dang, looks like we're not going to have a better day today! I didn't give her Motrin right away for a few reasons - I wanted to see what this temp was going to do, figuring it'd hang right around there, and also because it seems to WIRE her so I really only use it in much needed situations!

We snuggled, but she couldn't seem to get comfortable. The time frame of my night is a big blur - she asked for a bottle so I made her one. She drank half of it and threw it all up. Luckily I caught it all in her blankey, but bye-bye blankey for the night! Within a short time after that, with increased irritability, coughing, the whole works, I noticed she was really burning up. I took her temp again and it jumped to 104.2! Crap! I panicked, getting Motrin in her ASAP. We battled trying to fall asleep for quite a while - in the chair, in the bed, in the crib, in a little bed on the floor, nothing worked. Eventually that Motrin kicked in and she climbed off my lap and decided to play with the dollhouse - with just the light of another room dimly shining in. As I type now, she's laying back down on the little bed I made her with Playhouse Disney on. I hope she crashes soon, it's 4 a.m. and I just don't trust a 21 month old roaming the house while everyone is sleeping so I'm doing my best to stay awake! I'm SOOO tired and I'll have a 3 year old up in a few hours and I'm sure, another clinic visit this morning.

Sick!

2011-03-15T20:54:00.001-05:00

Over the weekend, Kara started with some respiratory problems again. We had a full eczema flare and a croupy sounding cough to go with it. By Sunday afternoon we had a low grade fever, thick, nasty nose and a terrible cough. We've been trialing almond milk and I can't help but think it's possibly a building reaction to that but as I start to sneeze more and more, I wonder if she's just "simply" caught a cold.

Yesterday morning we decided to bring her to the doctor. It was a little premature to bring her in, as I often do with her, simply because we know from experience how fast she crashes. It was found that both of Kara's ears are full of fluid again. Not infected, YET, but still, not good. Her lungs sounded ok but she's definitely not doing great. We were instructed to start her on the pulmicort and albuterol right away, three times a day until her symptoms subside. While talking about the fluid, I asked if it was time to talk about seeing the Ear, Nose and Throat doctor. We looked back in her chart and she's had constant fluid at all checks, if they weren't infected, except for the one days before our trip. (I think that one was a total miracle, by the way, to let us go on that much needed vacation!!!) We have an ENT consult in three weeks.

There is a lot more to think about with Kara getting tubes put in than there is with a "normal" child. It's a procedure that we are not going to take lightly. We aren't sure if the procedure will be able to be done at our hospital or if we'll have to travel to have it done because of the reaction Kara had when she had her EGD done at the U of M. At our consult, we'll talk with the ENT and if he decides tubes are now needed (that the benefits will outweigh the risks of the procedure) we'll need to have a consult with the anesthesiologist. I was told that normally, it's a quick and easy procedure - the child doesn't usually even have an IV placed. In Kara's case, she WILL have the IV, just in case. The anesthesiologist will have to be the one to do the procedure, not a nurse anesthetist, and she'll have to be watched extremely carefully after the procedure because of the tachycardia that she went into with the scopes. It's a lot to think about!

We didn't leave the doctor with any prescriptions this time, we already had the pulmicort and albuterol but if Kara doesn't turn the corner pretty quick (like by tomorrow!) we'll be bringing her back in to have an ear re-check and/or check for pneumonia. We are doing the nebs as prescribed but last night we even had to get up and neb her in the middle of the night because she was struggling so bad to get a breath with all the coughing she was doing. Poor baby.

So, I stayed home yesterday, Brian took the shift today and tomorrow is up in the air. Kara's wandering around the house between coughing fits and we are hoping for a healthy, happy girl to be able to go to daycare tomorrow.

Trying a Break

2011-03-15T19:55:00.000-05:00

We've been busy since we've been home from vacation, but mostly, I've tried to take a break from everything and try and get our lives back to as normal as possible. Trying to get back to reading, crocheting, the things I used to love to do before I sat on the computer night after night once my girls went to bed - researching, chatting with other FPIES Moms, scouring FPIES message boards - anything I can do to find help for us and to help other Moms. It's become an addiction of sorts to do everything I could to become the best advocate I could for my daughter.

I've had blog posts brewing but the words haven't been able to come out right. The last two days have now been extremely challenging for us in the FPIES world and I feel the need to write about it - 1) to help me remember what we've went through, looking back 2) to help the next clueless Mom who comes along my blog when searching for answers to her little ones condition and 3) to update friends and family of what's going on at our house and with Kara.

I'm going to try and do this in two separate posts. We'll see if I get them all done tonight - we've had a pretty unhappy little girl on our hands the last few days.

Arrival

2011-03-06T17:10:00.001-06:00

Shoes, check. Swimsuits, check. Toothbrushes, check. ID, check. Packing for this trip was an extremely difficult task. On top of all the every day basics that need to be packed for a weeks vacation for a Mamma and two little girls, I had a lot of other, VERY important items to remember. Items needed to be remembered because if forgotten, we'd be out luck. Epi Pen, check. ER Letter, check, Dr. M's food letter, check, Neocate - oh no! Where am I going to find the room to stash four cans of Neocate in our already full suitcase?! Benedryl, Motrin, AHH! A bottle! We can't forget the bottle! Cortizone Cream, Desitin, Prescription Antibiotic Cream, I think we could have used a suitcase for Kara supplies only!

Note to self: Just because you buy three seats and are allowed three carry on's, a diaper bag, and a purse, doesn't necessarily mean that it's a good idea to pack with what you are allowed to bring on the plane! Especially when you already have a baby in a carrier on your back and a 3 year old in the umbrella stroller! We must have been quite a sight at the airport!

The three of us travelled to AZ with one of my good friends and her daughter for a week in the desert, visiting my Grandparents, a little bit of sight-seeing, and soaking up the sun. We had quite the load but the trip there was quite an experience.

I'll start with picking Shannon up at 6:00 a.m. on Saturday morning. Kara was really confused as to what was going on, getting up early, rushing to get ready and getting shoved in the borrowed van with a blankie and bottle, in the dark. We picked Shannon and her daughter up and when we opened the door to load her stuff in, Kara had a fit. She cried and cried, so out of sorts, wondering what the heck was going on. Soon she was crying for Daddy and it took quite a bit of convincing that she was fine. Luckily, this was the only meltdown we had on the way there. Kara tends to get quite out of sorts if we're away from home for too long, even if it's just for the day.

Upon getting to the airport, we unloaded and had the three girls between Shannon and I in the lines as we checked our baggage and checked in. We got to the security checkpoint and started unloading, in the same fashion, keeping the kids in between us so they couldn't escape! We got all of our things through but since I had some liquids for Kara, we had to go through a little more extensive check than just sending our bags through the x-ray. No problem, I was prepared for that from travelling last year. What I wasn't prepared for, however, is having something in my bag flag me, to the point of having to get a pat down. I understand that they are doing their jobs, but we had no clue what triggered this, and I was told ahead of time that the foods that I had brought with for my severe food allergy baby was going to be just fine. Nothing like holding up the line with pure chaos as Mommy has to go through all of that. Ugh. I survived it with a laugh and we started loading everything back up. Threw all the bags in the stroller, got Kara strapped in and onto my back, let Brenna run, only to find that our gate was RIGHT.AROUND.THE.CORNER. So much for getting everything all organized again!

We sat down and fed the kids the lunch that we brought and talked about our flight plan. We had three seats on one side, and the two on the other so we were all next to each other. It was decided that Shannon would take Brenna so the bigger girls could play, and I'd try and keep Kara content in our seats. Although Kara is under two, I did purchase a seat for her because I never thought she'd sit for a minute on my lap, that she'd want to be a big girl in her own chair. Man, was I ever wrong. On the flight to AZ, she wasn't in her seat for more than 5 minutes, total. She napped about 20 minutes and the rest of the trip I fought her, climbing around all over me, going between Shannon and I, hollering PEEEEEE every time she peed until I could finally take her to the bathroom to change her, it was a battle. Once we arrived, we sat tight until the plane was mostly cleared so we could get our chaos off.

What an adventure. No one said travelling with young children was fun and my attitude for Saturday was that we just had to "fly" through the day and get there. Once there, we could sit down and relax, planning our week out.

Vacation!

2011-03-05T14:57:00.001-06:00

We got home last night from a week long vacation with the girls, to Arizona for a visit with my Grandparents. I have lots to say about our adventures and not a lot of time (or energy!) so for now, I just wanted to say that WE DID IT! We made it a week on vacation with no major food-related issues. Except for the Kara barfing in the carseat on the side of the highway, in the dark, ten degree weather incident. This, fortunately, was not an FPIES reaction, but certainly the icing on the cake of our long day of traveling. =)

Insurance Update

2011-02-20T11:05:00.000-06:00

This week I accomplished a few things with our insurance battle. I called the company and was told that I will need to have our physician write a letter of medical necessity and it will be reviewed for coverage. I picked this up on Friday and will be sending it in the next time we order formula. In this letter it was suggested that Kara be on Neocate Jr as a supplement for at least another six months. I'm hoping this works but I'm ready to battle if it doesn't.

I called the Medical Supply Company on Thursday to update them on my findings. I let them know that the (new) insurance company denied the formula as non-covered. They hadn't received that denial yet. I talked with the biller and explained to her that because I ordered it in December, I figured it would be billed as December's order but it arrived at the beginning of January so that's what they billed it as. I found out on Friday that they are going to now run it through as December's order since they checked their paperwork and it should have been put in as December. They are rebilling it now so I'm crossing my fingers that this works!!!

Potty Training

2011-02-20T08:55:00.000-06:00

If you were to stop at our house, you would most likely find a 21 month old running around naked. We cannot keep clothes on this child, despite every measure taken. At her doctor appointment last week we were told not only is it normal at this age, but she probably feels better with no clothes on due to her skin being so broken out with eczema.

Kara is also potty training herself. Herself, yes. Brian and I really want NO part in this but she is mostly trained, at home, anyway. Why would we not want to be on board with this, you may ask yourself? Well, because we are not really close to a baseline right now and I'm much more content changing nasty blowout diapers than I would be dealing with that in panties and clothes. She is just too up and down right now to have to worry about trying to have her potty training, too. She will go all day long, on the potty chair, hollering for us when she's "done", following the queues from her big sister. We are also going on vacation next weekend and the last thing I want to think about while traveling is a potty training toddler!

Friday we went to a camper show. The girls loved looking in all the campers, had a blast with it all The first one we went into, we were searching it out and Kara found the bathroom. From then on, we had a battle with every.single.camper.bathroom. A few of them, we were sitting in, talking to the salesman as the girls were exploring. On more than one occasion, while us being distracted, we found Kara sitting on the bathroom floor trying to take her pants off, insisting she had to go potty. THIS is why we don't want her trained yet! She's still, at 21 months, SO baby and doesn't understand, yet she wants to be three, like her sister. Oh help!

I'd heard of kids "potty training themselves" before but never quite understood that term until Kara. Yep, she's definitely training herself.

Insurance Battle

2011-02-13T20:40:00.000-06:00

We switched insurance companies on the first of the year to Brian's new plan, a much cheaper, better coverage plan. (So we thought.)

I got a call from the Medical Supply Company a few weeks back because they received a denial from the insurance company - they had billed my policy, which termed 12/31/10. I explained how I placed the order for Kara's Neocate in December, so I assumed it would be billed under my plan. This was going to work perfect because we met our out of pocket max for the year. I explained this to the gal I spoke with and she said they bill it out on the delivery date which was January 3rd. BIG BUMMER, but we'll deal with it. She was going to do some looking into this to see if they could change anything but then never got back to me.

Today, we were opening up yesterdays mail and we received some explanations of benefits from the claims we've already had this year. In this was a denial. A denial for $2,162.00, the monthly cost of Kara's Neocate. The reason? Non-covered benefit.

I think I've got my work cut out for me. I don't necessarily remember the details of my battles last summer, all I know is that it SUCKED. I did get it paid for eventually, but to have to do this again is not going to be fun, and, it's not like I have anything better to do, right?

We have all eight cases of formula still boxed up. If worse comes to worse, we'll have to return it (hoping they'll take the unopened cases back!) and try try try to get her on a well rounded diet so she won't need the Neocate. For now though, it's a staple in her diet. I'm already overwhelmed.

Pressing On

2011-02-13T19:39:00.001-06:00

So far we have a full 4 days of amoxicillin in Kara and we push on. It's definitely not going as bad as the augmentin went but we are having some questionable symptoms.

I've heard of FPIES Moms talking about how their child has periods in the night where they are wide awake. We've never experienced this symptom in the past but last night we had our first one. Kara was up for over 3 1/2 hours. It started with fussing, and lots of it. I finally got up and she looked at me asking for a ba-ba. I made a bottle, went to bring it to her and she screamed. She wanted to be snuggled. Ok, I can handle that. She laid in bed next to me, drinking her bottle. Once she was finished, I put her back in the crib and she screamed again. Something was wrong and she was in no way going back in there. I put her back in the bed with me and she snuggled. I rolled over, pretending to be asleep and periodically would look over at her, and those big blue eyes would be staring right back at me. For a while, she fussed and squirmed, and then finally had an icky diaper. Thinking this was the reason for the fussiness, I changed her and attempted to put her back in the crib but she would NOT have it. She normally dives into the crib, and is not a snuggler at all! She LOVES her crib! This went on as I watched the clock, starting at 12:30. At 4:00, the last time I checked the clock, she had finally started to relax and I was able to doze off, only to be woken up by this same behavior at 6:00. I grabbed another bottle, hoping she'd go right back to sleep and we battled, only this time she was one cranky little girl! With the lack of sleep and tummy ache all night and day, I guess it's to be expected.

We've had some icky diapers, some crankiness, and now the restless night. I'm trying not to think too much into all of this, and am trying to remember that the benefits are outweighing the risks at this point. We need these ears to clear up, so we press on.

PIZZA!

2011-02-13T18:09:00.000-06:00

One of Brian and I's favorite things to do was to go out to eat. Since Kara has started noticing that her food is different, this has been extremely difficult and our going to eat as a family has become non-existent.

Friday afternoon we were itching to get out of the house, and Brenna wanted pizza. We didn't have anyone to watch Kara and after much debating, I got online and started looking up ingredients. I found that Pizza Hut has one kind of dough that doesn't contain any dairy. I wasn't sure how their dough comes, or if it would even be a possibility, as their "personal pan pizza" dough does have dairy in it. I had the idea that maybe we could get a pizza made for Kara with a dairy free dough, some pizza sauce, and some ham. I called the restaurant and talked to Sue. Sue told me absolutely, what she could do was make her a small, thin crust pizza, just for her, with whatever we felt would be safe for her. She explained how her grand-daughter has celiac so she understands how difficult these things can be. I got off the phone and felt instantly emotional. Really? She not only helped me with ALL the ingredients to make sure what we were going to give her was safe, but gave me suggestions and told me to ask for her when we got there! I could have cried! (I probably would have, had I been by myself!)

We headed into town and when we walked in we asked for her. She came right out, and since we were undecided on the rest of the order, she confirmed exactly what we needed for Kara, let us know that she'd get it put in right away, and told us we could help ourselves to the salad bar, for anything that Kara would be safe eating. We ordered our pizza and in the meantime, Kara's pizza came. We made a production over her getting her own pizza and she was grinning ear to ear. She had her own, probably 8 inch pizza, with a thin layer of sauce on it. We handed each piece to her and she bit into it like such a big girl. Feeding her has been difficult lately, as she's sick of the same old, each and every day. She ate half of the pizza and was in heaven with this new-found food!!! We had a wonderful family dinner outing and can't wait to do it again!!

Tonight, I went to the Pizza Hut website and wrote feedback of our amazing night at their Baxter location, recognizing Sue for going out her way to make our experience such a great one. I'm sure she doesn't realize what a big deal this was to us, but in the FPIES world, anything that can help make life, especially mealtime, easier, is an experience never forgotten.

***I forgot my phone in the car, so I got NO pictures of this. I know the memory of it will last in my head forever, and I'm smiling, and *maybe, just maybe* getting teary eyed thinking back on the experience. =)

Ears Again:

2011-02-09T21:12:00.000-06:00

While at the doctor today, it was agreed on that it's no wonder Kara's been so irritable lately with how her skin looks. We were there for a check on her skin, a listen to her lungs because of that barky cough that's still lingering and then a check to see what was going on with her ears. Last week we were given a prescription since one ear was a little red. If she spiked a fever or if we otherwise thought she needed it we could fill it but that didn't happen. I didn't feel comfortable filling it when I didn't know what was going on inside. An antibiotic could be very risky again, causing her another reaction.

Kara was a little entertainer in the office and a very good patient. She's so good about getting checked out. After her skin was examined, she turned her head over to get a good look in her ears. Right away, it was commented on about how awful it looked. She coudlnt' believe she wasn't sick, or even MORE fussy than she'd been. Yuck. The other ear? Definitely red as well, but not nearly as bad. Great.

Here is the antibiotic conversation:
Dr: Which one does she NOT react to?
Me:No idea - she's had two and she reacted to both.
Dr: Amoxicillin or Zithromax?
Me: Well, we don't know about Amoxicillin, and she was in the hospital after Zithromax last year.
Dr: Ok, we'll go with Amoxicillin.
Me: Is that going to be strong enough to cut the infection?

Hmmmmmm...cross your fingers for us, pray for us, whatever it takes.

Skin Care

2011-02-09T20:52:00.000-06:00

Kara's eczema has gotten out of control. This is a picture of her ankle last night:

After some Benedryl last night she looked much better but by lunch time today it was back - ankles, arms, cheeks. It keeps her up in the night - her room is above ours so we hear all the kicking against the sides of the crib, the cries out, even though she's still half asleep. Poor baby has been irritable, miserable lately.

Luckily, I had a follow up appointment made for today. I was especially thankful after the flare up twenty minutes before the appointment today. We picked up a new prescription yesterday, a special cortizone cream, but I didn't want to use it until after we saw the doctor again today. After today's instructions from the doctor, we now have quite the array of creams and lotions for Kara's skin. Trying to keep this all straight after her bath was NOT an easy task!

Here is what we have now - these all need to go on her skin, every day, as needed. Some of them will be for a few days, others are just day to day care. Some spots are more prone to yeast (a problem we've dealt with since she was just tiny) and some spots are beginning to become infected.

Different strengths of cortizone, a topical antibiotic, moisturizers, a topical steroid, an antifungal and a barrier cream.How am I ever going to keep it all straight? Oh yeah, this is also on top of the benedryl for a few days, zyrtec and an oral antibiotic. = )

Fridays!

2011-02-04T12:31:00.000-06:00

Friday is my favorite day of the week. I work four days a week and get to spend Fridays home with my girls, while Brian is at work. I look forward to this day again every Sunday evening as we are preparing for the next few days ahead. We usually have way too many plans and don't get half of the stuff done we want, but it's quality time for us girls to spend together. We call these days "Mommy Day"!

Today, after playdates and other things going on the last few Fridays, I got up early with the point of cleaning bedrooms, doing laundry and going through the mounds of clothes that the girls have grown out of lately. Too much to plan in our short day together but what we get done, is done.

Kara had other plans for me today. About every ten minutes all morning, she'd have a mini-meltdown which would result in having to snuggle and rock-a-bye for ten minutes or so after. Normally, this would be great but she's still so out of sorts. What's better than rocking a baby, right? The ambition to get things done has slowly left me now. At 11:30, the rocking resulted in a sound asleep baby! While rocking my baby, thinking about all the things I should be doing, it reminded me of a picture my Mom needle pointed while she was pregnant with me, and we now have it framed and up in the girls' room. It says this:

Cleaning and Scrubbing can wait for tomorrow
for babies grow up, we've learned with our sorrow.
So quiet down cobwebs, dust go to sleep!
I'm rocking my baby, and babies don't keep!

Post Reaction 2

2011-02-04T11:49:00.000-06:00

Beef went fine. We were extremely nervous the night we tried it and watched the clock. Once we hit the 3 hour mark, Brian and I both took in a big sigh of relief. The rest of the week, we stuck with her normal, 100% safe foods.

Kara isn't back to herself yet. One week later and we are still having effects of the reaction. She is extremely clingy to me, fussy, and just not herself. We had been nebbing her once in a while because of that barky cough but that seems to have cleared up for the most part. I brought her in to the clinic on Tuesday because she wasn't sleeping well, and I just thought it was worth having her ears looked at again. We couldn't see our primary but instead, her old primary - she had him pre-FPIES. Ears looked ok, one was a little red. He was more concerned of some sinus-type symptoms developing. Because of her history he was afraid to treat it quite yet. He sent us home with a script for amoxicillin, if absolutely necessary. He took time checking out her skin. He mentioned maybe trying a pro-biotic (this word seems to be coming out more and more in these FPIES Kiddos!) but didn't have a whole lot of advice for me on what to look for, since he isn't at all familiar with FPIES. He also mentioned that he thinks she would benefit from seeing a dermatologist. I asked what a dermatologist is going to have us do besides cetaphil, vanacream, cortizone, miconazole, and the other cocktails we use on her skin on a daily basis and he answered how they look at the big picture and might have some more ideas to get her cleared up. I put that on the list to talk to her primary about - I'll probably bring her back in this week, if possible, to check that ear and discuss the other issues going on.

Digestively, she's back to baseline, now is the trouble of finding baseline again for all the other systems!

Post Reaction

2011-01-29T09:25:00.000-06:00

Yesterday Kara started the post reaction symptoms which reassures me that what happened the night before was an FPIES reaction and not just a fluke vomiting episode. Yesterday we noticed how her eyes were really puffy and her skin tone, very pale. Last night she started with that barking cough again that we just got rid of! We kept her diet very basic yesterday, backtracking to bottles again when we were just about ready to be done. I wanted to make sure she was hydrated and was scared to give her too much for food.

We have ruled out ham - that was the only food she had for dinner yesterday that she had the day before. I'm thinking that I'll have to try beef today for lunch to see if that was it. Very confusing, and scary to try any of those foods but we have to know. They seemed safe for so long. If she does fine with those few foods she had for dinner that night, than we'll have to settle with the idea that she got something she shouldn't have had, and that we'll never know what that was. I don't know what I'd feel better with!

Reaction

2011-01-28T13:02:00.001-06:00

We took a break from the chicken and went back to Kara's two safe meats - beef and ham. She had beef for lunch yesterday in her spaghetti and then ham for supper last night, along with a little bit more beef when she was at Grandma and Grandpa's house. I packed her safe little meal, as I always do when we leave the house with her. We were taking her big sister out to her favorite pizza joint for going to bed like a big girl all week. Leaving Kara with Grandma and Grandpa would be more fun for both girls and we wouldn't have to worry about keeping Kara out of the pizza!

We got back to pick up Kara, she ate really well, all of the dinner we sent with - ham, green beans and some Kara-safe oyster crackers - and then she wanted more so they gave her a Kara-safe hotdog. While we were still there she had a very icky, questionable diaper. What the heck? We went over with his parents everything she had eaten through the day and couldn't figure it out. Oh well, it's not unusual for her to have off symptoms lately. I started thinking back to how I thought she was having a build reaction to the chicken, then reminding myself she hadn't had it in 2 days.

We packed up to get home for bedtime, to stick with our routine that we had going so well. Both girls were in bed and Brian and I were watching TV. We heard this horrible scream, he muted the TV as I jumped up to run upstairs. He asked if he should come and I yelled "follow!" Deja Vu struck hard. The screaming, the foul smell coming from her bedroom, I knew what was happening before I even got in there. We found her sitting in her crib, covered in vomit. I grabbed her and went to the bathroom to get her cleaned up while Brian stripped the crib, the entire time wondering what the heck she was having a reaction to. Once I got her settled down and cleaned up we went down to snuggle, to make sure she was ok. Her tummy was one big knot and she had a few really big, questionable burps. No more vomiting occurred though. (Very strangely, I forgot about our ER plan - the letter we have in place if she does have a reaction.) I think she did ok with this one because she only vomited the one time. She took a few sips of water and snuggled in while he called his parents to go over everything again.

We have no real idea what the heck caused this reaction. It wasn't chicken because it's been a few days since having it. It was beans, ham or beef unless she got a hold of something she couldn't have, which I kind of doubt - she's SO good at picking things off the floor if she finds something, and bringing it to me. I can't imagine what the heck happened. It's been over a year since her last vomiting reaction. I want to say it was last December that she had the oat reaction.

Today's diet? Kix and Neocate so far. Can't go wrong with that - I'm not ready to give her anything after what happened last night!

Chicken Part 2

2011-01-28T12:35:00.000-06:00

Update: I had this saved in my drafts from a few days ago, I never got a chance to get it posted.

Chicken seems to be going ok. Yesterday I wondered if we were going to have a fail but she seemed to eat well last night and then again for lunch and dinner tonight. There's so much gray area, when I wish it could be black and white. With the rice and oat reactions, they were definite, and serious enough for me to not even consider touching them with a 10 foot pole ever again! It seems like so many of our foods that we've trialed in the last six months have been the same pattern. Day One is ok, Day Two is questionable, and then a few more days of questionable symptoms that we push through until finally, she is back to normal again. I can't help but wonder if her body is just that sensitive that anytime a new food is introduced, she has a sensitivity with it until a few trys later. Does this even make any sense? We push through symptoms and then she is fine, tolerates the foods just fine.
My mind is constantly going back to the pear fail we had this summer. I should probably read the posts I wrote around that time to remind myself of what happened. I have been wondering, since she's ok with so many other fruits, if that was a coincidence of symptoms and if I would have pushed through, would she have been fine? I do remember how sick she was, I have a picture of my poor baby laying on the floor, so uncomfortable that even Mommy's arms weren't comforting enough for her. I can't figure this out and it makes me crazy! I really want to think that her only FPIES foods are the rice and oat, that she has a soy intolerance and a dairy allergy and then just go full board with everything else, but do I dare? That sounds easy enough but still, avoiding the dairy and soy is extremely hard by itself!
I think I'm going to give chicken a break for a few days and then trial it again to see if we can figure this out. I wish there was another way to know besides trial and error on everything!

Where's Your Teeth?

2011-01-19T21:03:00.000-06:00

Kara has been into pointing out features on her face lately. She loves her eyebrows and now, her new favorite is her teeth. I think they are my favorite too!

"Kara, where are your teeth?"

Ears

2011-01-19T20:45:00.000-06:00

Earlier this week, I brought Kara back to the doctor. Her cough is gone for the most part, but she has still been really irritable, not sleeping well, and I thought that warranted a return for an ear check. Both of her ears are still full of fluid.

We discussed this fluid problem. In a "typical" child, it was explained that they'd let this go about three months before a referral to an Ear, Nose and Throat specialist. We all know that Kara is far from "typical", even more so as the Cardiologist explained how sensitive it seems her entire body is, after reviewing her history. Basically, we have a lot more than just GI problems going on with Kara. Kara's doctor wants to see her back in 3-4 weeks and it was decided that if she still has the fluid at that point we'll be referred to the ENT. We really don't want to risk anymore ear infections and she's high risk for them with the ears being so full of fluid. If her irritability increases or she spikes a fever again, back in we go.

Ear tubes are not a big deal, a no problem, in and out procedure for "typical" children, so why we are jumping the gun and worrying about this for Kara, when really, it could help her out immensely? In October, when Kara had her EGD done, she had a terrible reaction to what we think was from the Fentanyl that they gave her but we really have no idea. She ended up in tachycardia for 24 hours afterwards and had some horrible swelling in her feet and legs. It was the scariest thing I've ever gone through in my life, watching her so sick! For now, we are praying that these ears clear up but keeping our options open, trying to weigh them out.

I wasn't sure if I was going to blog about all of this or not, since it's not necessarily FPIES related, but then decided, maybe it is - FPIES babes are definitely non-typical so even though it affects their GI system so bad, it really affects so much more than that. It seems every few days, we are finding out different connections on how our babies have so much more in common than one would think!

Chicken!

2011-01-17T19:02:00.000-06:00

I've been trying to start food trials again to add on to Kara's menu but she has not been eating well lately. It's hard to trial a food when she won't eat anything!!!

We got really brave one night last week while making supper and decided to trial (GASP!!!) CHICKEN! (Remember my turkey Thanksgiving post? No poultry...) It's on our "Common Trigger Foods" list on our fridge but she'd had it here and there before. This was all prior to us being anywhere near a baseline with her but I always sort of wondered if it'd work or not. Chicken is a staple in our house so it's been even more difficult to come up with meals lately and making a separate meal for Kara three times a day gets difficult. That's for a later post though...

So, we gave her a few bites, I think two nights in a row. It was hard telling her symptoms because we've been dealing with the effects of this cold that she's had too. In the chaos of our lives, we stopped it. I've been incredibly frustrated again at every meal lately. She.will.not.eat.anything.

Tonight I gave her some hamburger with ketchup in it, usually a favorite. She squealed in her chair and threw her spoon - hey, at least we've graduated from throwing entire plate when she's not happy with what's on her tray! I gave her some balls...I mean, peas. This usually goes over well - a good squish with her finger and then she picks each one up and eats it. She pushed this away and squealed. I put some jelly on some of her special bread. She smiled, took a bite and then was mad again. I had her sit at the table with us and Brian cooked up some chicken breasts we had in the fridge. I gave her a few bites of that (with the ketchup, of course!) and she ate them right up! She shocked me! The first challenge of a food challenge is always getting her to eat the food. She successfully had a good size serving of chicken tonight and loved it. I'm REALLY hoping that it loves her too!

Cough, Cough!

2011-01-10T18:58:00.000-06:00

Last Thursday I thought for sure we were headed down the road of Kara needing to be admitted for fluids again. She was so, so sick. She laid on us and cried, we fought her changing her diaper every 10-15 minutes. Thank goodness we didn't give her anymore of the Augmentin. Thursday evening she started perking up a little bit and by Friday she seemed a lot better.

At her appointment on Friday she was still really ornery, irritable and looked sick but a lot better than the day before. Both of her ears are still pretty red, and she's really "junky" sounding. We have had to up her nebs to three times a day, adding Pulmicort to the mix now. I was instructed that from now on, at the first sign of cold, to start this cocktail. If she doesn't show good improvement from this, we'll have to discuss putting her on Prednizone. If she spikes any fever at all again, we have to bring her back in as well. Poor baby.

Today she is doing much better but still has the really icky cough. I keep hoping for some major improvement in her airway and hoping we don't have to go the route of any more meds. She has an ear check in three weeks so hopefully we won't have to go in until then! As if this FPIES stuff isn't hard enough to deal with, we have the airway and ear stuff coming up now. Ugh. It's a never-ending battle!

Sick Baby!

2011-01-05T19:43:00.000-06:00

Kara has not been getting better. Poor baby! Her cough is awful, her nose is still running, she still looks sick. Today is Day Five for the antibiotics so I called the doctor today. She wondered why we were put on Augmentin, something so strong for her poor little digestive system, and told us to call it quits. Kara has an appointment on Friday morning with her, if she can make it that long, otherwise we'll see someone else tomorrow.
The augmentin is wreaking havoc on her body. Her bottom is so raw, it actually bleeds when you wipe it. I got a call at work yesterday that both outfits were used from the diaper bag so to pack two for today, then today that all three were used. We've been caking her bottom with desitin, with a&d, with whatever idea I come up with each time. She is SO sensitive.
We are going in the wrong direction with the bottle. She won't eat so we are giving in to feeding her a bottle anytime she asks and anytime in between. Poor Kara gets so dehydrated so quickly and we've been down that road a few times in the past so I'm taking no chances of it happening again.
I guess we can add Augmentin to her list of non-tolerable meds. Last winter it was Zithromax, and that made her so sick, she had to be hospitalized. These are the only two oral antibiotics she's been on, and so far, two strikes. I'm hoping we can pull through this. Thank God she's been healthy since last winter!

Happy New Year!

2011-01-02T14:48:00.000-06:00

We have been looking forward to a fresh start of 2011 for the last month or so of 2010.

Kara has had a lingering cough for a few weeks now, needing to be nebbed occassionally. Yesterday morning, New Years Day, her cough seemed to be worsening. By noon she was in bad shape and stayed that way through the rest of the day. We nebbed her over and over again and she'd cough until she'd throw up. By 9:00 last night the nebs weren't helping and she was getting worse so we made the decision to head to the ER. While waiting, Kara coughed and coughed, almost puking again. By the time the doctor came in to listen to her, her lungs were cleared. (go figure!) He checked her over and looked in one ear - bright red, infected. Hmm. Other ear, same story. She's never had an ear infection so this shocked me but certainly explains a lot.

She was put on antibiotics and with that, comes the fear of how she'll handle them. We have two doses in and side effects are already beginning. Hopefully she won't continue to go downhill from here. Sometimes it's a fine line to weigh out risks versus benefits.