Talking about FPIES

Do you have any idea what the term FPIES means? I sure didn’t, until my daughter was diagnosed with it. And despite weeks of nonstop research, I’ve still not found any situation that’s similar to ours, so I’m writing – for the first time ever – a “Day in the Life” blog post that ISN’T humorous, in the hopes that this helps other people out there feel like they’re not alone either.

B was diagnosed with a serious egg allergy when she was six months old. But about a year ago (when she was two), I casually mentioned to her allergist that she happened to react strangely to both codfish and – get this – TURKEY. After hearing her symptoms, her response was that B seemed to have a pretty rare condition called FPIES, which can be life-threatening in a totally different way than an egg reaction. My mind was officially blown.

Let me back up. On 2-3 separate occasions, B’s eaten both broiled codfish and Thanksgiving turkey. About 4 hours afterwards, she’d start throwing up – consecutively – until there was nothing left in her stomach. The whole ordeal took around 2-3 hours, and by the time it was finished, she’d be absolutely exhausted.

I sort of chalked that up to the fact that, well, she just barfed for 60 minutes and it was now 2am, but apparently it’s a lot more serious than that. While you’re in the middle of having an FPIES reaction (which, by the way, stands for “Food Protein-Induced Enterocolitis Syndrome”), your blood pressure and temperature both drop (from vomiting and dehydration, I presume), and if they drop too much – which happens in a LOT OF CASES – you can go into shock and, if not treated immediately, can die.

Unlike a standard allergic reaction, FPIES don’t show up in allergy testing and an Epi-Pen won’t help you as there’s no evidence of your issue on the skin or in your breathing passages. The treatment – assuming you know you’ve ingested one of your “trigger foods” (which is, in and of itself, hard to do with a child) – is a dissolvable tablet called Zofran that’s supposedly given to chemotherapy patients to prevent nausea. The idea here is to make them not vomit and then, by extension, not have their blood pressure drop (but who knows what side effects you get from the drug too, though people seem to say it’s wonderful).

This was yet another case where I much rather would have never known this information, because I previously was just like, “OK, it’s terrible that she has to throw up a lot, but at least it’s not dangerous. At least it’s not an egg!” But alas, nothing is ever easy, and so here we are.

B’s case is different than everyone I’ve encountered thus far. Most kids have FPIES with soy or dairy and also outgrow their FPIES fairly early on, but we’re pushing four-years-old right now and just had a reaction to something new the other night that I can’t pinpoint for the life of me. We also don’t get diarrhea, which is an extremely common side effect too. And for goodness sake’s, who the hell is allergic to TURKEY?!

She’s such a trooper, though. I changed her sheets after one of her episodes and then waited outside the door to see if she would fall asleep, hoping that we were finished. About two minutes later, I hear her leap out of bed and run past me, up onto the bathroom stool, and heave-ho right into the sink. She turned around, looked at me, and said, “Don’t worry, Mommy – I came here because I didn’t want to dirty your new blanket.”

** Cue the tears. **

Anyway, sorry for the depressing post, but I wanted to share because so many kids have vomiting, diarrhea and other intolerance issues but have no idea that they could have FPIES because they get misdiagnosed with something else. And from everything I’ve read, it sounds really serious – and of course there is no cure – so if your little one is having food issues, ask about FPIES as a possible cause – though I hope for your sake that they don’t have it.

More information: The FPIES Foundation