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, December 15, 2010

FPIES Update

Our FPIES life has been pretty uneventful lately, which is perfectly fine with me! We have been trialing eggs (in the form of scrambled) here and there and I'm pretty sure they are just fine. One thing that has been going on, however, is that Kara's croupy cough has been back. It's tough to distinguish whether or not this is food-allergy related or if it's just that time of year. Either way, I've contacted her physician to let her know that we are doing daily nebs lately. I hope this isn't an indication of how our winter is going to go with her respiratory system, she hasn't had so much as a simple cold since her bout of RSV last February.

We were given the ok to slowly trial soy in oil and lecithin from Dr. Helm at Kara's last appointment. The last few days I've been giving her a Ritz cracker and she is loving it. No digestive problems from them, yet but we are going to do this SLOW. If this cough doesn't stop, I'll pull both the eggs and the Ritz for a while to see if we see any improvement but I just don't feel like that's what the problem is.

Our FPIES  live has finally starting to get to the point that I don't think about it every day. What a relief. I never thought we'd get to this point and looking back on how our summer went, it's amazing. Kara has gone from being  so far from baseline, dropping on the charts,  fussy baby to a thriving, happy, personable 18 month old. We have a few dinners that we all can eat - a pork roast with potatoes and carrots, spaghetti with hamburger and sauce. Life is again, getting a little easier every day. I can only hope we can continue on this path and not find anymore reaction foods!

3 comments:

  1. Great post! Love the entire last paragraph. What is your safe pasta?

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  2. She has corn pasta and has recently passed wheat so that's easy enough for everybody!

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  3. So happy to read this!! I can't wait for a day where I don't think about FPIES all day long. Thanks for the hope :) I hope Kara's cough/cold takes a hike soon and she's feeling great!

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