Your Kid’s Allergic to WHAT?: Our FPIES Journey

So, this was originally a Facebook post to inform, and thank, certain family and friends. I’ve edited to bring everyone up to speed. Full disclosure: if you’re eating, save and come back after you’re done. Thanks for reading!

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If you know my eldest daughter, you know she’s a happy, inquisitive, robust, healthy kid! You probably also know about our discovery of her food allergies, and what that’s meant to us as a family. At 6-months-old, she had a terrifying bout of vomiting that sent us straight to the hospital. After 2 more instances, a community of moms pointed me towards the term FPIES, and it changed our whole lives, from the way we all eat, to the way we parent. Seriously! Since then, we’ve discovered our second daughter has something similar (Food Protein-Induced Proctocolitis [FPIP], or Allergic Proctocolitis [AP], depending on who you ask), and is reacting through my breastmilk (evidence, because even the professionals aren’t up-to-date). At the moment, FPIP entails pooping mucous and blood if I have certain foods, but we’ll tackle that in another post.

Food Protein-Induced Enterocolitis Syndrome (FPIES) is thought to be a t-cell mediated reaction. Instead of getting hives or going into anaphylactic shock (IgE-mediated), my daughter starts vomiting and doesn’t stop. It’s called a vomit-to-shock reaction, and it involves just that – vomit until she goes into shock. It’s delayed, so if she ingests a trigger, the pukey pukey doesn’t start until 2 hours later, which makes it very difficult to figure out what caused it. She also has “chronic reactions”, which cause a full-body rash, upset stomach, and (like her sister) mucousy poop. This is why I look like a crazy person at parties or gatherings where there’s food.

Her only known acute trigger so far is oats, and her first attack was from ONE cheerio. Not her first ever Cheerio, either. I know this because she was still almost exclusively breastfed at that point, and that was the only thing she “ate” that day. It was late, and we were so excited because we’d given her some cheerios, mostly to play with, and she picked one up and ate it herself! Woohoo! 2 hours later, she was throwing up. Within 20 minutes, she was pale, limp, her body temp had dropped to the low 70s, she couldn’t focus her eyes, she wouldn’t nurse, and we were throwing on clothes and rushing to the hospital. By the time we got to the ER, she was throwing up bile (stomach acid), and it was happening so violently that she was aspirating it (breathing it into her lungs). She was literally drowning in her own vomit. They rushed her back, and she was already so dehydrated (she’d only been throwing up for 30 minutes, we lived 10 from the hospital) that they had a hard time placing an IV. I have to give huge props to the nurses at CMC Pineville, who were quick, efficient, caring, and kept us all calm.

Unfortunately, after that attack, we were told it was a stomach virus and sent home. This is a very logical assumption; we had no idea what FPIES was or that she had it, and nobody would assume that ONE cheerio could make a kid that sick. I only figured out the connection after the third attack, which was weeks later, and preceded by some oatmeal cereal. The second attack was a week after the first, and we assumed it was part of the stomach bug.

Charlotte is fortunate enough to have many specialists who are well-versed in food protein allergies. We have a GI specialist, who we thankfully only see yearly, and an allergist, who we see a few times a year. There is no definitive testing for FPIES; it’s diagnosed solely by clinical history. What’s horrifying is that many doctors aren’t aware of these types of allergies, so they flat out deny their existence, putting many children in actual, physical danger. Last October, FPIES officially got its own ICD-10 Code. Before that, it wasn’t “recognized” as a diagnosable ailment, and therefore couldn’t be tracked. There’s so much to it, from a proper diagnosis at the hospital, to treatment plans from pediatricians, to school food restrictions (I’ll give you a hint: without a formal diagnosis, it’s a nightmare, and even with it, there are still many hurdles).

So, our plan going forwards is fairly simple. Now we obviously don’t give her oats. Our list of things to avoid because of the chances of a reaction was strange but it’s how FPIES goes. Our “AVOID AT ALL COSTS” list was: oats, wheat, barley, rye, rice, soy, poultry, and dairy. The staples. We’ve successfully added in poultry, but rice causes a chronic reaction (as do corn, pork, strawberries, and raspberries). We have a HUGE list of safes, and we’re incredibly thankful for it, but everything we add to her diet involves a “trial”, which we do Saturday mornings, when we’re both at home and have a day to spend in the ER, if needs be.

I’ve heard, “Well, if you don’t have an epi pen, it can’t be that bad.” Wrong allergy. Epinephrine is for those IgE mediated reactions. “Well, maybe it was just a fluke, it can’t be that bad.” Nope, not a fluke. And yes it can be that bad, and it was. It scared the ever-loving shit out of us, and I hope you never EVER have to experience something like that. “If it’s that bad, maybe you just shouldn’t leave the house, then.” … Fuck you very much.

We take her out to restaurants, and bring food along because she usually can’t eat anything on the menu, but we’re getting there. Nobody ever minds and everyone says she’s very well-behaved. We’ll take it!

I made black bean brownies instead of cake for her first birthday and they were a huge hit with the kids! Nobody minded that either.

Our last reaction was the day after Halloween 2015. Thankfully, we were able to manage it at home, with fluids and rest. It’s likely that she’ll grow out of her FPIES reactions, though some research is discovering that there are some people who never outgrow it. Have you ever heard someone say, “I can’t eat ____, it makes me throw up, so I just avoid it”? It could very well be FPIES and their reaction isn’t as bad, or it’s just as bad, but they can avoid it.

Anyway, that’s our story. We appreciate everyone who’s been so understanding, patient, and accommodating, even if you didn’t fully understand the allergy. This has definitely changed how I view all allergies. I no longer question parents who insist their children must avoid strange foods. You never know someone else’s experiences, and sometimes it’s just too hard to have to explain the whole thing. So, please, don’t scoff at people who talk about food allergies. It’s serious business.

 

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Author: Barb Machina

I write a blog prompted by my wandering idealism, and relentless pursuit of justice. At best, I write evidenced-based pieces that focus on health, medicine, human rights, politics, science, parenting, and history... At worst, it's a stream of consciousness, fueled by wine and other.

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