FPIES: Food Protein-Induced Enterocolitis Syndrome

Previous Mighty Munchkin Maintenance Post.

You may remember that our little munchkin was tested for a possible soy allergy. Yes, that story was about a month and half ago, and it shouldn’t have taken so long to figure out if Kaylee is allergic to soy but we hit some snags along the way… long story, more about that coming up. As it turns out, Kaylee isn’t allergic to soy but she has something called FPIES. FPIES mimics food allergies, but no antibodies are produced in the reaction (which is what happens during an allergic reaction). Rather, it is a gastrointestinal reaction characterized by severe vomiting and/or diarrhea. Hmmm, well that does sound remarkably like the munchkin’s response to soy.

Let’s take a step back…at Kaylee’s 12 month wellness checkup she had blood drawn to check for a soy allergy, except they didn’t get enough blood to complete the test. A week later I received a very apologetic phone call letting me know they needed to take blood again. Simply stating that first attempt to draw blood was unpleasant would be an understatement. Not that it was anyone’s fault. It’s not easy taking blood from a 12 month old, but when I received the phone call Kaylee still had a bruise on her arm. With that unsuccessful attempt still fresh in my mind, I pushed back a little, asking if a skin test would be a possible substitute for a blood test. It turns out I didn’t really have to push, the office agreed that a skin test would be a perfectly acceptable alternative and gave me the names of some allergists in the area. Of course the earliest allergist appointment we could get was a month away.

Last week I sat across from the allergist describing Kaylee’s reaction, and the doctor looked a little taken aback. He interrupted me with “The type of reaction you’re describing is very rare.” Well, OK, it’s rare. I didn’t really know what to say. Nick and I had researched allergic reactions and vomiting wasn’t exactly top on the list, but there really seemed to be a connection with the soy and vomiting. Then he tells me it can be a potentially life threatening reaction. This is not what a mother wants to hear. Of course, he then elaborated on how this wasn’t a traditional allergic reaction. He also explained that there’s a good chance she’ll grow out it by three, and how at some point they may do a food challenge to see if she still has the issue. In case you’re wondering, a food challenge is where they feed you the offending food in a medical environment and watch to see what happens. Sounds a little shady, I know. The real kicker is the doctor seemed hesitant to even mention a food challenge. Apparently he recently participated in one with another little girl having the same issue as Kaylee and it did not go well. Seriously, he looked a little scarred from the experience, but it made me feel good to know that he wasn’t nonchalant about such things.

Kaylee was skin tested for soy just to make sure there wasn’t an actual allergy (and it was negative). Which brings me to the next point…I’m glad that we decided to take Kaylee to an allergist because FPIES can’t be diagnosed through allergy testing. He said that the condition is rare enough that he’s only seen three cases of it. And just for a point of reference he didn’t look particularly young and he specializes in children’s allergies.

What does this mean for the next few years? Well, no soy for Kaylee. Unfortunately, because of the severity of the reaction, the doctor also said no soy bean oil. I didn’t realize it at the time, but practically everything has soy bean oil in it. Most breads, animal crackers, gold fish, cookies, and candy all have soy bean oil. I’d also be willing to bet that most restaurant food contains soy bean oil. Not that we were planning to shove candy and cookies down Kaylee’s gullet anytime soon, but it will get harder as she gets a little older to avoid soy. For instance, she’s a bit young for trick-or-treating this year (at 14 months), but next year she won’t be too young and I haven’t seen any chocolate that doesn’t contain soy bean oil. Obviously it’s not the end of the world, I just feel bad. I can see why a parent would want to do a food challenge. Once she goes off to school, it will be really difficult to make sure she doesn’t eat any soy products. Not because we can’t provide her with non-soy food, but because she’ll have more access without our supervision and will she really understand why she needs to avoid certain foods? We’re pretty lucky though, the probability is high that she’ll grow out FPIES. We probably won’t do a food challenge when she’s three, but when she’s old enough to ask and understand what’s involved (and wants to do it) then we’ll consider it.

I almost forgot to mention what happens if the munchkin consumes soy by accident. The doctor will be writing a set of instructions for us to take to the emergency room. If she accidently eats soy and we know it, we’re to take her to the ER with our set of instructions, which will read something like…observe patient for at least five hours. If vomiting occurs begin IV fluids, monitor blood pressure, etc. Hopefully, we’ll never have to do that.