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.

Wednesday, August 31, 2011

The FPIES Foundation

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


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

Sunday, August 28, 2011

Week in Review

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

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

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

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

Wednesday, August 24, 2011

The First Dinner

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

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

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

Two Choices

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

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

Monday, August 15, 2011

The Plan

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

Tuesday, August 9, 2011

Immunology and Hospital Follow Up

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

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

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

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

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

Follow Ups

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