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, September 6, 2010

Potato Trial and GI

Our latest food trial is potato and we just finished day 2. She doesn't care for them too much so it's sort of a struggle to get her to eat them. I fried some up with corn oil tonight so I'm hoping she'll eat them a little better tomorrow.

As always, I'm debating what our next trial will be. I don't know if I'm ready to try a fruit, vegetable, a meat yet, or even wheat. After our pear fail I'm a little leery on another fruit but I would really like something to flavor her water a little bit, especially with our latest (almost) bout of dehydration. We really struggle to get her to drink her Neocate and even then, she'll only take it out of a bottle and sometimes even refuses that.

Tomorrow we go to the U of M for our follow up GI appointment. I'm really anxious for this trip, as usual. In the last month we've had two fails - soy and pear and two passes - banana and corn. At this rate we aren't getting anywhere very fast! We will find out tomorrow if Dr. S will scope Kara. with the recent pear fail and the week + of getting back to baseline, I'm really hoping that she will decide to do this. Poor Kara has reflux going on, not to mention her other icky tummy problems!

I have to pack for tomorrow and figure out some way to pack her food for the day - keeping it cold, warming it up, what to pack her, how to feed her. Going to a restaurant is out of the question, it's just not fair to Kara to eat in front of her like that. We'll probably be relying on Neocate tomorrow with Kix to tie her over and more or less entertain her.

I'll update about the GI as soon as I can. Wish us luck!


  1. Brian just corrected me - I wrote it "with the recent corn fail" and shoudl have put "pear fail".
    Corrected! :)

  2. Good Luck tomorrow! I'll be thinking of you guys!

  3. good luck!!! Kendall, I can't even imagine how trying this must be for all of you....especially Kara.
    I'll keep you guys in my prayers. Take care and good luck tomorrow!

  4. As a bit of encouragement, when we trialed potatoes my son was not very interested at first. We were lucky to get enough in him to even call it a successful trial somedays.

    He quickly learned to love them, though. He has only had them plain. Boiled, "baked" in the microwave, or baked at a restaurant. He now will eat two small potatoes in one sitting. I'd say it's probably his second favorite food (behind ground beef).