Friday, May 7, 2010

Blown away: FPIES

No, unfortunately this isn't a recipe for pies. It's all about FPIES. Here's the story:

Siena has been doing so well over the past year, but after a couple of encounters with allergens, I decided it was time to get some more questions answered. We were originally told she should grow out of her allergies by a year of age. Since that hasn't happened, I wanted to check in and see what to expect in the future and how they recommend to go about challenging allergenic foods.

We were finally referred to a pediatric allergist in Seattle, and we had our appointment on Wednesday. He asked us the usual questions and proceeded to do another back scratch test on Siena, which is nice in spite of the pricks because it answers so many questions so quickly (you know, without the three-week cramping and diarrhea multiplied by the number of foods tested). Lo and behold, the allergy tests all came out negative! But Siena is still in the middle of the Las Vegas salad reaction and has definitely not grown out of her problem. HOW COULD THIS BE?

It turns out that Siena does not have, nor did she ever have, allergies. We came home with a brand new diagnosis: FPIES, or food protein-induced enterocolitis syndnrome. FPIES mimics allergies, but the actual immune reaction involved different players and is therefore a completely different disease. FPIES is more serious than allergic colitis and is characterized by profuse diarrhea and vomiting hours after ingestion. Fluid loss can lead to lethargy and shock, which must be treated in the ER. Food challenges, according to many reputable websites, should be done in the hospital in case of a serious reaction. The most common problem foods, as with allergies, are dairy and soy, but include others like grains and legumes. This explains Siena's problems with rice and lentils, which are not common allergens. The good news is that most children outgrow it by age 3, or even, according to my doctor, by 18 months. Siena is now 19 months. So we could be seeing this improve anytime.

We were sent home with instructions to challenge her problem foods at home, starting with the foods that are least likely to cause a problem. Assignment #1: once Siena is over her current salad reaction, give her 1/4 serving of wheat. If no reaction occurs, wait two days and try 1/2 serving. If no reaction occurs, wait two days and try 1 serving. If no reaction occurs, move on to Assignment #2, which is eggs. I'm a little nervous to try it, especially after reading all the ER stories, but her reactions have never been that severe in the past. Hopefully it goes smoothly, and if it doesn't we will know what is happening and what to do, and we will have more answers and information for her follow-up allergist appointment. Unfortunately there is no FPIES test besides just trying the foods. Those three-week sick periods are required if we want answers and if she is still reacting. :(

I'm pretty blown away by this whole change in plans. Two days later it's starting to sink in. While it's scary to read about serious reactions requiring emergency room visits and hospital food challenges, it's good to know kids grow out of it. I found an FPIES facebook group, and while it seems that kids usually haven't grown out of it by 18 months or even necessarily 3 years, it does happen and kids grow up to be healthy adults. I was braced for a similar duration for food allergies, so I guess the plan remains about the same.

As for this blog, I have decided it makes sense to continue. FPIES mimics allergies so closely that we operated very successful under the allergies model for a year and a half. Also, even if we had the correct FPIES diagnosis in the first place, our course of action would have been the same. So here I am. Now an FPIES mom, but still eating allergy free (or... um... FPIES free??), and still writing about it.

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