tag:blogger.com,1999:blog-58587624541375869392024-03-13T21:52:16.039-05:00The FPIES of Our LivesKendallhttp://www.blogger.com/profile/11328250322553186025noreply@blogger.comBlogger191125tag:blogger.com,1999:blog-5858762454137586939.post-87877416205157164642012-04-27T14:11:00.000-05:002012-04-27T14:11:06.037-05:00Caring BridgeI have neglected this blog lately. We took a little break from everything and right about the time that we needed to get back to the doctors for follow ups, things started spiraling out of control. <br />
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Kara has recently been diagnosed with Grave's Disease, another auto-immune disorder, and with all of this, the appointments, the symptoms, the new medications, things have been very, very busy and very overwhelming for all of us. <br />
<br />I recently started a Caring Bridge website for Kara, for many reasons, to better track visitors, it's a little easier for me to get on and update, and so on. If you have been a follower of this blog, please continue following us at <a href="http://www.caringbridge.org/visit/karanelson1">www.caringbridge.org/visit/karanelson1</a>. It's FPIES, Grave's, IgA deficiency, IgE allergies, and whatever else comes up, all in one. <br />
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Maybe someday I will get back to this, but for now, it's going to be on caring bridge. Please drop in and see how we're doing, and leave us a message in the guestbook!Kendallhttp://www.blogger.com/profile/11328250322553186025noreply@blogger.com0tag:blogger.com,1999:blog-5858762454137586939.post-2789887114047974142012-02-20T20:46:00.000-06:002012-02-20T20:46:17.571-06:00Five Foods!Trying to decide which food Kara is going to trial next has been very difficult. I'm trying to go by the foods that she had safe, or so we thought, in the past. Our latest food trial pass was driven by Kara. I was in the pantry, at a loss as to what to make for supper (As usual!) and she was right there with me when I asked her what she wanted to try next. She said "Peas, Mamma!", so peas it was! <br />
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Generally you are supposed to start with a small amount and work in a little more each day. We haven't done that with Kara with the re-trials because we have a general idea that they are going to be passes, with the exception of corn. I gave her a small bowl of peas at dinner and she wanted more, more more. It was hard to stop her and I didn't want to deny her food, when she was actually eating! <br />
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After a week and a half, we felt comfortable to call peas a pass! She was eating large amounts each day and was symptom free, bringing us to the magic number FIVE! Sweet potato, white potato, beef, apple and peas are the foods that consist of Kara's tiny, yet growing diet! Bring on number six! <br />
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Yesterday at breakfast I asked Kara what she wanted her next food to be and she replied "Nana's, Mamma!" Banana it is! I'm half tempted to call banana a freebie but will stick with it for at least a week, I think, just to make sure. Banana has never seemed to cause her any problems and she loves them. It's so much more exciting to trial a food when I can have her input on it! It's not worth it to me, to trial a food that we are going to struggle getting her to eat!Kendallhttp://www.blogger.com/profile/11328250322553186025noreply@blogger.com0tag:blogger.com,1999:blog-5858762454137586939.post-75787530558806136422012-02-20T20:33:00.001-06:002012-02-20T20:33:28.231-06:00InfluenzaA few weeks ago, Kara woke up from a nap not feeling the best. By bedtime she had a pretty high fever, and by 2 am, it was 104.2 and she was grunting with her breathing. Panicked, we got up and headed in to the ER. Kara definitely had croup and was given a dose of Decadron after a clear chest x-ray, but before we left, I was talking with the doctor a little more about her IgA deficiency, the fact that we never did have a good time to get her a flu shot, and maybe, what if, do you think, that she could possibly have the flu? He said he doubted it, but given her history he would swab her for the test. He instructed us that we could leave after she was swabbed and he'd only call if it was positive, but again said he doubted that's what it was. We had the test done and were on our way home. <br />
I got Kara back to bed and just settled in myself when my phone rang. Sure enough, it was the doctor. "I can't believe I'm calling to tell you this, but her influenza test was positive!" He had a prescription for Tamiflu at the desk for us to pick up in the morning when the pharmacy opened. <br />
I was crazy worried about giving this to her, but the benefits were going to greatly outweigh the risks and with Kara's respiratory history this was something we needed to do. Kara made it through the five days of Tamiflu exceptionally well and we were able to get her through the virus at home until the following Monday when I brought her back in to her primary. She had another chest x-ray which showed questionable pneumonia, but again, we were able to get her through it with the nebs and medications at home. <br />
Close to two weeks after the flu diagnosis, we were still noticing that she had a really icky cough but seemed better otherwise. The conversation between Kara's Primary and myself, and the Allergist and myself was whether or not we should put her on Prednisone to help with that. If she went on Prednisone we wouldn't be able to do a food trial and at this point, we are trying so hard to build her tiny diet. I ended up not filling the prescription and went on with a trial. She is still having some barking cough symptoms here and there but the nebs are doing their job and we are hopefully through this!Kendallhttp://www.blogger.com/profile/11328250322553186025noreply@blogger.com0tag:blogger.com,1999:blog-5858762454137586939.post-41391498389763136982012-02-08T20:45:00.000-06:002012-02-08T20:45:27.119-06:00The Last MonthWow, nothing like leaving you hanging!!! So sorry!! It seems like I could name every post lately "Update" because I've been awful about updating! <br />
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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! <br />
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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? <br />
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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?Kendallhttp://www.blogger.com/profile/11328250322553186025noreply@blogger.com2tag:blogger.com,1999:blog-5858762454137586939.post-41260609533477294472012-01-10T20:06:00.001-06:002012-01-10T20:07:15.472-06:00Waiting for ResultsI 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. <br />
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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! <br />
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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. <br />
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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!Kendallhttp://www.blogger.com/profile/11328250322553186025noreply@blogger.com0tag:blogger.com,1999:blog-5858762454137586939.post-51562838256188862742012-01-10T18:42:00.000-06:002012-01-10T18:42:38.228-06:00Re-trialWell, 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.<br />
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!Kendallhttp://www.blogger.com/profile/11328250322553186025noreply@blogger.com0tag:blogger.com,1999:blog-5858762454137586939.post-22109962655335795742011-12-28T20:17:00.001-06:002011-12-28T20:17:54.246-06:00Following UpWe 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! <br />
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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. <br />
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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... <br />
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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...<br />
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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!!!Kendallhttp://www.blogger.com/profile/11328250322553186025noreply@blogger.com0tag:blogger.com,1999:blog-5858762454137586939.post-75796185732547605862011-12-21T11:15:00.000-06:002011-12-21T11:15:58.422-06:00Reaction!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. <br />
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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! <br />
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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! <br />
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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! <br />
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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. <br />
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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. <br />
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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!Kendallhttp://www.blogger.com/profile/11328250322553186025noreply@blogger.com0tag:blogger.com,1999:blog-5858762454137586939.post-3532687320587911332011-12-20T19:09:00.000-06:002011-12-20T19:09:11.408-06:00Family FunI'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. <br />
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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! <br />
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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. <br />
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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! <br />
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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!Kendallhttp://www.blogger.com/profile/11328250322553186025noreply@blogger.com0tag:blogger.com,1999:blog-5858762454137586939.post-56953812046788965202011-11-19T16:04:00.000-06:002011-11-19T16:04:18.072-06:00Two Years AgoWe 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. <br />
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Please read <a href="http://fpiesofourlives.blogspot.com/2010/11/one-year.html">last years po</a>st to see the first reaction and where we were at both one and two years ago. Today is bittersweet.Kendallhttp://www.blogger.com/profile/11328250322553186025noreply@blogger.com1tag:blogger.com,1999:blog-5858762454137586939.post-44588090577718268542011-11-19T15:57:00.000-06:002011-11-19T15:57:48.613-06:00Potatoes!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! :) <br />
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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!Kendallhttp://www.blogger.com/profile/11328250322553186025noreply@blogger.com0tag:blogger.com,1999:blog-5858762454137586939.post-88798592551468962942011-11-19T15:39:00.000-06:002011-11-19T15:39:43.247-06:00BiopsiesLast 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. <br />
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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. <br />
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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. <br />
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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.Kendallhttp://www.blogger.com/profile/11328250322553186025noreply@blogger.com0tag:blogger.com,1999:blog-5858762454137586939.post-52260526498968882512011-11-11T13:20:00.000-06:002011-11-11T13:20:58.308-06:00Mayo GIWe 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! <br />
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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. <br />
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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.<br />
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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.Kendallhttp://www.blogger.com/profile/11328250322553186025noreply@blogger.com0tag:blogger.com,1999:blog-5858762454137586939.post-74139135169649994652011-11-11T13:10:00.000-06:002011-11-11T13:10:50.798-06:00The ScopeLast 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.<br />
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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! <br />
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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. <br />
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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. <br />
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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.Kendallhttp://www.blogger.com/profile/11328250322553186025noreply@blogger.com0tag:blogger.com,1999:blog-5858762454137586939.post-84084193426119898162011-11-08T13:42:00.000-06:002011-11-08T13:42:30.973-06:00The BenefitSaturday, 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. <br />
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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! <br />
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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.Kendallhttp://www.blogger.com/profile/11328250322553186025noreply@blogger.com0tag:blogger.com,1999:blog-5858762454137586939.post-10188424054963706402011-10-30T22:10:00.000-05:002011-10-30T22:10:59.227-05:00On the News!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..." <br />
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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. <br />
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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! <br />
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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! :) <a href="http://www.lptv.org/index.php?option=com_wrapper&Itemid=228">Kara Nelson Benefit</a> (I'm being an awful critic of myself, but Kara was adorable and that's all that matters!!! I need some R&R!)Kendallhttp://www.blogger.com/profile/11328250322553186025noreply@blogger.com0tag:blogger.com,1999:blog-5858762454137586939.post-43191148718238210382011-10-30T21:47:00.000-05:002011-10-30T21:47:02.967-05:00Scope UpdateFriday 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. <br />
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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. <br />
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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. <br />
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Another busy week awaits us but as long as we have progress, I'll take it! :)Kendallhttp://www.blogger.com/profile/11328250322553186025noreply@blogger.com0tag:blogger.com,1999:blog-5858762454137586939.post-57421087522454230382011-10-30T21:13:00.000-05:002011-10-30T21:13:43.520-05:00Allergy and GIMonday 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. <br />
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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. <br />
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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. <br />
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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. <br />
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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. <br />
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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.Kendallhttp://www.blogger.com/profile/11328250322553186025noreply@blogger.com0tag:blogger.com,1999:blog-5858762454137586939.post-41175449037755524972011-10-22T16:19:00.000-05:002011-10-22T16:19:19.082-05:00Losing HopeOn 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. <br />
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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. <br />
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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 <span style="background-color: yellow;">then</span> 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...) <br />
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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. <br />
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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. <br />
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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. <br />
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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! <br />
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I sure hope that something a little more positive comes out of next weeks appointments. We sure need it around here! <br />
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.Kendallhttp://www.blogger.com/profile/11328250322553186025noreply@blogger.com1tag:blogger.com,1999:blog-5858762454137586939.post-70186832197703098562011-10-22T13:20:00.000-05:002011-10-22T13:20:21.384-05:00Corn FAILI 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. :) <br />
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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. <br />
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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. <br />
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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. <br />
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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??? <br />
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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. <br />
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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. <br />
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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. <br />
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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! :)Kendallhttp://www.blogger.com/profile/11328250322553186025noreply@blogger.com0tag:blogger.com,1999:blog-5858762454137586939.post-59203972729706557112011-10-22T12:28:00.000-05:002011-10-22T12:28:08.978-05:00Playing in the CornLast 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! <br />
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...<br />
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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...<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjb7gDnJoxXReDYC1g7C_h1Jh9I_nwrpz1w6crv5oARfWm8vJMXlzQE0UBxKaCxM_WSPyfkBYey4O5pHKroeSIwOpSYpNCNRWDeQWfswpl1R7w3NfJeJqTr_CCRigViLLKnviAJpziiB__G/s1600/corn+box.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" rda="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjb7gDnJoxXReDYC1g7C_h1Jh9I_nwrpz1w6crv5oARfWm8vJMXlzQE0UBxKaCxM_WSPyfkBYey4O5pHKroeSIwOpSYpNCNRWDeQWfswpl1R7w3NfJeJqTr_CCRigViLLKnviAJpziiB__G/s320/corn+box.JPG" width="240" /></a></div>Kendallhttp://www.blogger.com/profile/11328250322553186025noreply@blogger.com0tag:blogger.com,1999:blog-5858762454137586939.post-21974538343833284272011-10-19T22:03:00.000-05:002011-10-19T22:03:22.697-05:00A Late UpdateI 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! <br />
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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! :( <br />
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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! <br />
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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. <br />
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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. :) <br />
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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. <br />
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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.Kendallhttp://www.blogger.com/profile/11328250322553186025noreply@blogger.com0tag:blogger.com,1999:blog-5858762454137586939.post-10899918020211054762011-10-11T20:47:00.001-05:002011-10-11T20:49:21.469-05:00Getting CloserLast 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. <br />
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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. <br />
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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. <br />
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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. <br />
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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. <br />
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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.Kendallhttp://www.blogger.com/profile/11328250322553186025noreply@blogger.com0tag:blogger.com,1999:blog-5858762454137586939.post-19611463454513175022011-10-11T20:05:00.000-05:002011-10-11T20:05:36.385-05:00UpdateWe 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!!! <br />
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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! <br />
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I'll update as soon as I get a chance after the appointment.Kendallhttp://www.blogger.com/profile/11328250322553186025noreply@blogger.com0tag:blogger.com,1999:blog-5858762454137586939.post-1059785078061733302011-10-04T21:09:00.000-05:002011-10-04T21:09:53.073-05:00A SetbackKara 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!<br />
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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. <br />
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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. <br />
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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! <br />
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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.Kendallhttp://www.blogger.com/profile/11328250322553186025noreply@blogger.com0