Kara was diagnosed with food protein induced enterocolitis syndrome (FPIES) in August of 2010. She has had many FPIES reactions and complications that have lead to numerous hospitalizations and specialist appointments. It was a huge sigh of relief to finally have some answers and a diagnosis, however we have to remind ourselves daily that this is a very serious disease and this is only the beginning of the long road we have in front of us.

Thursday, April 28, 2011

Allergy Update

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!

Sunday, April 24, 2011

Raising Awareness

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!

Saturday, April 16, 2011

The Ba-Ba

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.


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!

Thursday, April 14, 2011

Gastroenterology Appointment

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!

Monday, April 11, 2011

Another Reaction

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.


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

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!

Wednesday, April 6, 2011

Neocate: Three and Final!

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!

Sunday, April 3, 2011

Neocate Coverage: Two

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.