Living with FPIES

October 14, 2018

Last week on social media, I shared that David has FPIES, which is a food allergy/type of allergic reaction. He cannot eat oats or rice (I can’t either since I’m currently still breastfeeding). I shared about some of my feelings related to his diagnosis and my fears, but I figured since today is Global FPIES Day, it would be a good chance to share some education on what FPIES is and how you can educate yourself about this lesser known food allergy!

I want to make one thing clear about this post, well, maybe two! One: I’m sharing facts from sites that have been recommended to us by our pediatrician to read up about FPIES. I’m not making this information up, basically. And second, I’m not sharing this for sympathy. I’m sharing this because David has a very real, very scary food allergy that just isn’t well understood by medical professionals and the rest of us alike. I’m not sharing this to make anyone feel bad or feel like they have to go out of their way for us. I just want you (anyone reading this, ha!) to understand what we’re dealing with, what life can be like for someone with a food allergy, and just to educate. I know that David doesn’t have a food allergy in the traditional sense (he won’t go into anaphylactic shock) and that there’s others out there with it worse… but I still think education is important! Okay… now that that’s out of the way…

What is FPIES?

“Food Protein-Induced Enterocolitis Syndrome (FPIES) is an allergic reaction in the gastrointestinal system… Unlike most food allergies, the FPIES reactions are delayed and usually begin about 2 hours after ingestion of the causative food. FPIES reactions are characterized by profuse vomiting and diarrhea.” (www.FPIES.org).

So… it’s a food allergy that causes symptoms that can lead to dehydration and in some cases, shock. Our biggest fear is that if David ingests oats or rice, he will vomit for a few hours and the bigger fear is that if he does so, he won’t keep enough in his system to maintain his hydration. Someone that small… it’s really scary to think about.

Our experience with FPIES

David got sick on July 25th about 2 hours after he had some rice cereal at home. He’d had rice cereal numerous times before – it was the first “food” we ever gave him. He hadn’t had it in about a month, but the container was still good. He ate, went to sleep, and basically woke up vomiting. Ryan called me to let me know and we called the pediatrician. David kept vomiting every 10-15 minutes and I rushed home, where I found him curled up on Ryan sick and very, very lethargic – he barely even acknowledged me when I came into the room. If you’ve ever met David, you know he’s anything but lethargic on a normal basis so I was immediately even more concerned as we waited for the doctor to call us back. The doctor called back and suggested we go to the Kids Med around here, so off we went. David vomited twice more on the way and by this time (almost 2 hours since he’d started vomiting), his vomit had turned yellow and bile filled.

At Kids Med, they checked him and got anti-nausea medicine in. They wouldn’t let me nurse him until they were sure the medicine had been in his system long enough (they were hoping it would prevent him from more vomiting). He vomited a few more times while we were there. He had no temperature and the two x-rays they did came back normal. No mentions of FPIES. Not even anything about an allergic reaction. They just assumed something was backed up in his stomach/intestines and he was finally getting it out. David seemed to be feeling better by the time we left and he nursed – and kept it down! We went home with some more of the anti-nausea medication and we all had a restless night of sleep, waiting for something to happen again.

The next evening, my pediatrician called me and suggested I look up FPIES. I’d briefly heard of it in a few of the nursing support groups I was in on Facebook but honestly hadn’t given it much thought. She recommended we review the list of symptoms against what happened the day before and call her back. We looked at the symptoms and called back immediately. Before we knew it, we were scheduled to see the allergist. When we went to the allergist, we told her our story and she looked at us and said “It’s enough for me to diagnosis David with FPIES. Especially given the timing, the symptoms and most importantly – the lethargy.” I looked at her and I couldn’t believe there was no blood test or way to be sure, but that’s how it is. While in the office, we did a standard skin test for other allergens, and thankfully, everything else came back negative. We were told when David is 2 or 3, we will bring him back into the office for a test to see if he’s outgrown the FPIES or not. Until then, we avoid oats and rice.

So, why are you telling us?

FPIES isn’t well-known. People think it’s this bizarre thing we’re making up (not everyone!). But seriously, they look at me like I’m speaking another language when I tell them what it is. And people think avoiding rice and oats is easy. Guys, it’s not. Oat and rice are in SO many things. And for babies? Rice flour is EVERYWHERE. I’ve spent weeks scouring boxes and bags for teething biscuits for one that was safe for David. None of them are. No puffs, nothing. We’ve managed to find one brand that has something similar and my mom is amazing and has created homemade snacks for him. But it’s insane. Oh, and did I mention we’re not having dairy either because he can’t handle cow’s milk (not uncommon)? Oi.

Having a child with a food allergy is NEVER something I thought I’d experience. Neither one of us have food allergies, but here we are. It’s SCARY, you guys. I can’t imagine how some of my friends do it – kids with more than one allergy that’s SUPER life threatening. It’s crazy to me. I honestly live with a lot of anxiety about where we go, where we eat, if David’s/my food is safe, what ingredients someone uses when we eat somewhere that isn’t our house or our family’s… The anxiety is hard. I think I feel a lot of it in our household. I’m so thankful for family and friends who are supportive and understanding, but I’ll be honest, with the holidays coming up, I’m getting even more anxious. There’s so many things that people can give David without me knowing and even a little bit will hurt him. This goes for the FPIES triggers AND dairy…

If I’m being honest, when we saw the allergist, I took in everything she told me. I took the list of things he could have and what he couldn’t. I listened, I nodded, I immediately began reading even more labels than before. I took it in stride (or tried to). I tried really hard to not make a fuss about it. But it took me months to say “David has a food allergy” not just “he can’t eat that”. We were in Target looking at Halloween decor with my parents and it hit me… he couldn’t trick or treat normally. So many candies have a) dairy and b) rice flour. And it’s not like this will pass before he trick or treats. He has this issue until he’s 2 or 3.

I didn’t want to say he had a food allergy because I didn’t want to be a problem. I didn’t want to have people upset that we couldn’t eat something or had to ask about ingredients. I didn’t want to offend other people.

….

Seriously? I can’t believe I did that to us. His allergy is just as serious as anyone else’s. Telling people what we can and can’t eat isn’t annoying, it’s important. And that’s OKAY.

What can we do?

Okay, okay. I know I’m starting to ramble. So here’s the thing… people always ask (once they finally understand I’m not speaking Greek) how they can help or what they can do.

  1. If we come to your house to eat, PLEASE leave labels out for me to read. We can’t have anything with rice, oats, rice flour, etc. (and unrelated to the FPIES, we can’t have dairy either right now). If you make something with these ingredients, please don’t be offended if we don’t eat it.
  2. Please DO NOT feed David unless you’ve asked me (or Ryan) first, are sure of the ingredients in what you want to give him or have food we already gave you/approved for him. It’s too risky otherwise. Don’t be offended. I know people love babies and helping out and we appreciate that, but we have to be careful.
  3. Please take FPIES seriously and don’t just brush it off saying “he’ll grow out of it” or “a little bit won’t hurt”. Yes, he likely will grow out of it. But until then, it’s something we have to watch carefully.
  4. Ask questions! I want to help educate and share what’s going on. It’s something we’re all learning about together. I’ll do whatever I can to answer your questions but definitely check out the FPIES Foundation and the International FPIES Association for more questions too!
  5. Offer allergy-friendly alternatives when you’re able. With Halloween coming up, take a look at the Teal Pumpkin Project. See if you’re willing to participate! Lots of kids would love that!

So… that’s FPIES. I’m not sure if you learned anything new or not, but I hope so. Please ask questions and I’d love to hear about your experiences if you have something similar going on! We’re all here to support and love each other!!

xoxo

Kristina, Ryan, and David

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5 Comments

  1. Tatiana

    Hi Kristina, My daughter has FPIES and she is 5. I read your post and it was like I had transported back in time. She can’t eat wheat, soy, oats or avacado. I had a moment of crying alone in the condiment aisle looking for salad dressing while still breast feeding since I couldn’t find one. There are ups and downs and your family will find a way. You mention Halloween, we would go to a kids museum where they had Halloween crafts, science experiments, games etc. We tried not to make everything about food (so very hard), but Halloween is her favorite holiday! Now we go trick or treating and I carry around safe candy, she knows what she can and cannot eat and “trades.” There is never a moment I wish she didn’t have to go through this, but I think she has more empathy and understanding for “different.” The kids in her class even know about her food allergies to keep her safe 🙂 my biggest piece of advice is to just do the best you can on good and bad days. Let yourself get upset, let yourself feel proud, it can be a hard road to navigate. The strongest mom’s I have met are food allergy mom’s!!! 🙂 Good luck!!!

    Reply
    • kristina

      Thank you so much! That’s such a great idea!! I definitely hope to encourage activities that are more than food for him as the years go on! I get so nervous about someone else feeding him but hopefully that will pass and eventually when he understands, it will be easier on me some (I hope!). Thank you so much for sharing! This is so helpful!!

      Reply
  2. Alli

    My 10-month old son also reacts to oats. We have been advised to stay away from all grains. I am curious as to which snacks you are feeding David’s I am struggling to find alternatives.

    Reply
    • kristina

      Since we are able to eat grains that aren’t oats or rice, I’ve been able to find two types of snack puffs he can have. Creamies by Happy Family/Happy Baby and ONE bag of Gerber’s. My mom also makes a lot of homemade bread for him that we dried out for something resembling teething biscuits. I’ve also done a lot more fruit and veggies for him! 🙂 I hope that helps!!

      Reply
  3. Donna

    Fpies mom here, great post, I feel your pain. My baby reacts to rice, wheat, oats, broccoli and pineapple. A lot of doctor’s dismissed us but we literally have the text book reactions to these foods. It’s not well known and rice is in everything. It’s so crazy.

    Reply

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