Monday, July 14, 2014

FPIES Sucks... A lesson in accidental exposure

As I’m beginning to learn, FPIES really sucks. Last night we had an accidental exposure to rice. We thought we’d be safe going out for fast food, and just ordering something that didn't have rice in it. Well, apparently, after calling the company HQ and asking for a breakdown of the ingredients in the sauce, rice flour is used in the making of the flour tortilla we ingested (edit: and found out the maltodexterin was rice based as well). My poor baby had a very bad night. Took almost 2 hours to go to bed (when she was clearly tired), was overly fussy, woke up about 20+ times, had gas and tummy pain throughout the night, and hiccups on and off all morning. Needless to say, I feel guilty not being as vigilant as I should have been. I feel terrible that I was too tired to cook, and the shortcut came at the cost of our daughter’s comfort and health. Unfortunately, today was supposed to be day 1 of the break in our corn trial, so now I might get mixed symptoms when we start back up in a couple days. This contamination thing is no joke. If I eat rice, or anything with rice, she gets it through nursing. If she eats rice, or anything with rice, she gets sick. It just feels so very unfair to see her go through this over and over again.

Our follow up appointment is coming up next week. I feel very frustrated and at a loss for what to ask the allergist. Where do I even begin? I feel like I don’t even know what to ask. This feeling of being helpless is frustrating, and makes it hard to enjoy “living in the moment” with my sweet little girl, when all I do is stress about her food… is she getting enough, too much of what she can have, are we causing eating problems in the future, will she have weight issues, will she have food aversions because we limited what she could eat at such a young age, will she gain weight, lose weight, ever stop nursing….. not to mention all the questions about trying to understand her condition, and what it is we should be doing to help her. Today is just a frustrating kind of day.

1 comment:

  1. I am sorry so to hear this Raechelle. Unfortunately rice or rice products is an ingredient in a lot of foods. This may start you on another journey of non-GMO/non-processed foods. I see you writing a FPIES cookbook in the future. But yeah, one day at a time.

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