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.

Friday, August 6, 2010

Gastro Appointment

Wow, what a day, but a good one at that.

We got to CentraCare and got checked in, but we were 20 minutes early. Perfect time for Kara to run around after our car ride. The nurse came out and asked for Kara's parents. Uh-oh. I thought "if they think they are sending us home for any reason, they are CRAZY!" She said Dr. S. was running far behind, she had a patient that was taking them quite a bit longer than anticipated. We joked that she'd be running even later after seeing us! She suggested we run and get a bite to eat which was no problem, our appt was at 11:2o and we hadn't eaten yet, so we ran to the deli at the clinic. Shortly after, we were called. On our way into the exam room, Brian said the doctor poked her head out and apologized for running late. Wow. At the time we were roomed, it was only 20 minutes later than our appt time was! The nurse did her thing and within minutes Dr. S. was in to see us. She walked in, again apologizing and Brian joked with her - "no problem, as long as you give us some answers with our daughter!" She couldn't promise us that! :)

Have I ever mentioned how impressed I am with this place? We have had nothing but good experiences here so far! Dr. S. started by asking us why we were here. After a week of that question going through my head, I answered her by saying "Kara has been recently diagnosed with FPIES after months of questioning. We are struggling with this and she's still not "right" so I guess I'd like to start all over and see what we come up with." With that, she listened to our story and asked questions as needed.

Some of the questions were really hard to answer since it's all about her random reactions that we can't figure out the trigger for. (this is going to get kind of icky but what do you expect, it's a blog about digestive problems and a visit to the gastroenterologist!) We were asked specific questions about her dirty diapers. I explained that in the last few days, I realized that I should really be LOOKING at them to make sure things are ok. All I could think about was getting her arms held down by my legs as I change her as quickly as possible, get medicine on her bottom and keep her hands out of there! I told her it's quite a task that normally takes two people to complete! She understood this completely. I told her the smell of these diapers is disgusting and "not right". I told the story of a night not too long ago that I got to the bottom of the stairs to rescue my screaming baby and could smell it from there. After some review, she decided to do the 3 day test for blood in her stool and go from there.

After much discussion and a brief, painless examination, she decided that we are going to start at square one with Kara. Basically, we have no clue what is causing these random reactions. She's now on day 3 of good days but what was it - the chicken? the peas? the beans? something completely random each time? We haven't had good control over this because of the lack of direction. It seems so simple and it's definitely been on my mind this week - Start over - let's just do the formula and see if we can get things under control. I've read about "baseline" in other blogs and message boards and now that we got some direction from the doctor, I'm thinking that's what this means. We are to make three lists. The YES list, the NO list and the MAYBE list. To begin with, the NO list is the rice, oat and dairy. The foods that she's had the shock reaction to, and the dairy being an IgE allergy for her. We are struggling with the YES list. So far I have barley, bananas and neocate on it. The rest I'm up in the air. There are a lot of maybes that I think would be a yes but we better leave them in that maybe column for now. I've been questioning apples - something she's had often but she's also had icky diapers often. She's had beef and pork recently and done decent on it but is it an actual YES? Some of these reactions don't happen until the 3rd, even 4th time of having them. Maybe we'd be better off doing the barley with Neocate and starting there. Either way, this is NOT going to be fun because she knows when she's missing out. I feel like to be fair, we need to not eat anything in front of her. Does she know the difference? It's so tough!

Dr. S. explained that FPIES is a fairly new diagnosis in the last few years, and basically a term for multiple food allergies for now. She's not going to put this dx on Kara quite yet. In doing these food challenges we are going to find out if it's reactions or if she has something completely different all together, or on top of the FPIES. Because of her textbook reactions to the rice and oat, I'm pretty sure she does have the FPIES but the fact that we can't get her back to "normal" (whatever that is) is making us question other things as well. We go back to see the doctor in one month. If we have any problems or are not having success with any foods that we challenge, we will see her before then at the U. If anything comes out of the stool test, we'll be seen sooner as well. We talked about scoping her and at this point she wants to see what happens with the food challenges but if the blood test comes back positive then she'll be scoped right away, the same if we continue having problems.

I asked her what she thought about the chicken, peas and beans. Should those be in the NO column or can we put those in the maybe since we don't know which one it is? She said we can put them in the maybe but at the bottom. (if we ever get to the bottom!) She said the same thing with eggs, since she's only had those the one time. Put them towards the bottom and just be really cautious with them - maybe just give her a half of an egg to see what happens.

All in all, I was very pleased and felt good leaving there. We have a long month in front of us with these food challenges but we'll do what it takes to get some answers for Kara. She's calling me from her crib - it's 8:30 and she's just waking up. Yesterday must have been a long day for her!

No comments:

Post a Comment