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.

Sunday, August 15, 2010

Improvement

We've had two full days now of nothing in Kara's diet but Neocate Jr. and Kix as a snack for her to munch on while we are eating. We've also had two full days of "normal diapers" and no tummy aches. Amazing. The barley was hurting her more than anything with the soy in it.
I'm not real sure what our next step is going to be. I feel like I'm depriving her (mostly because of constant comments of "That's ALL she can have???") but she seems to be doing pretty good. I know we should continue this for a good week, right, fellow FPIES Mommies? I need the reassurance that what I'm doing is right because it feels so wrong to not be feeding her like we were but she feels pretty darn good.
What's a good recommendation for a 2nd food to try? I'm not sure the carrots and apples were fails now, with the amount of barley she was consuming at that time that had the hidden soy in it. I'm going to say soy is definitely a fail now though, instead of just a possible! Should I go with a fruit, vegetable, should I trial wheat? I'm looking for something with the most possibilities for meals and also with some filler in it. I feel like we are back to a newborn again because on the formula, she is constantly hungry!

2 comments:

  1. Kendall - I think that the three most common safe foods for FPIES kids are pears, spinach and grass fed lamb. My daughter just passed pears and we're starting on spinach tomorrow :) Good luck to you!

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  2. I say HOLD for at least a few more days. I am SOOO glad to hear she is so much better! Yes, I'd agree- watch for soy as her senisitivy may be higher than you previously thought as well.

    I vote- after giving her tummy a few more days- to go with corn. If she is already getting the Kix and tolerating them, it shouldn't be a problem but this way you can be 100% sure corn is safe and then you can add this more to her diet- Kix of course, but there are many other corn things (there is a thread on corn on BBC somewhere and many great idea's about all the corn things that are safe). Then, after you're sure that is safe- go for the wheat or a fruit or veggie (I 2nd the vote on pears, spinach and lamb- have heard MANY success with these for FPIES kiddo's).

    A word of caution though- go slow, slowly and gradually increase her corn doses and watch for signs.

    Good luck and keep us posted!!

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