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.

Monday, August 9, 2010


With this new elimination diet and the food challenges that we are starting, I feel like I have a new baby again, one that we are just starting to introduce foods to. You try a new food for 3 days, try another one, and so on. For some reason, we never picked up on anything specific early on, maybe it's because Kara was always a very poor eater and was pretty much dependent on breast milk. Her full blown FPIES reactions were only the 3 times with vomiting to the rice and oat. It's after she stopped nursing that we really started noticing some GI upset going on and that has since increased as she ate more foods.

The last couple days have left me with guilt. I know I can't dwell on the past and we need to move on to get some answers but daily, CONSTANTLY, I'm left feeling like if ONLY that doctor would have listened to our story last January, we wouldn't be in the place we are now. We'd have control over this situation. We'd have specific answers in what she can and can't have. Instead he told me that I NEED to feed her something besides breast milk and when she's screaming in her high chair and won't eat, I can't just give in and "offer her my breast". It makes me sick to think back on that day. We were creating "food aversions" in her, I was told. Kara definitely did have her share of food aversions and still does but we got through them. We had our paperwork going for the feeding clinic but she started doing better with accepting food so decided not to go and we've gotten through it.

We have a pretty hefty bill down at MN Gastro. They are a tier 2 with our insurance company which really sucks so we are working towards an entirely different out of pocket/deductible. This is the same with St. Cloud and our other specialists. Our bills are going to be enormous but we can't put a price on Kara's care. When our allergist told us at our first allergy appointment a little over a month ago that Kara definitely has FPIES, we talked about our still lingering gastro bill. I deal with patients, their bills and their complaints daily in my job and the last thing I wanted to be was one of "those" people who complain so I left this ball in Brian's court. He called down there and told the billing rep our story. About a week later, the day I was frustrated with Kara being broken out in unexplainable hives, the patient advocate called me to get my part of the story. We had heard nothing back and haven't thought too much about it until today, when we received a letter in the mail. This letter states " I apologize that we did not meet your expectations and as a customer service gesture, we will write off the balance of your account..." This was SO awesome to get in the mail today. It doesn't make things ok considering we could be 6 months ahead of schedule with her care but it's certainly a help. Now if only we could get these tummy aches under control and get some more ok foods besides Neocate and barley, things would be awesome. Oh, and write off the rest of these medical bills... :) Our care has been awesome at St. Cloud and there are no complaints there. I'll take that any day!

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