Adventures in FPIES: The Infant Disease You've (Probably) Never Heard Of

What is FPIES? It stands for Food Protein Induced Enterocolitis Syndrome. It's a rare infant disease I'd never heard of until suddenly it threw my family into the world of serious food allergies.

I sat down and Googled, "my baby throws up every time I feed her solid food". The very first search result left me speechless. As soon as I began reading the information on this website, I absolutely knew this was what was wrong with my baby.

WASHINGTON, D.C. (Catholic Online) - Darling Daughter #4 was about six months old, and since I was an old pro at this stuff, I did the same things I'd done with the first three girls. I got some Gerber Rice cereal, and some Oatmeal cereal, and some pureed apples and pears. She'd been showing a real interest in the foods I was eating, and she seemed hungry, so I decided it was time to introduce some solid foods.

I fixed a small bowl of rice cereal like I'd done a hundred times before in years past, and mixed in a little apples. My daughter gobbled it all up gladly. Success! I expected nothing else, of course, since I was an old pro at this. (ahem)

2 hours later... she suddenly became very agitated and crying, and then began vomiting. Then she became limp and lethargic. Then more vomiting. She threw up every fifteen minutes for about 2 hours. She was like a wet dishrag, and she was pale and weak. I thought she'd come down with a nasty stomach bug.

Then after a few hours, the vomiting had stopped and she perked up. Her color came back, she seemed more energetic, more like her normal self. And she wanted to nurse. I was hesitant, but I knew she needed the hydration and if anything was likely to agree with her stomach again, it was breast milk. So I nursed her. She drank herself into a nice, long nap, and that was that. She was right as rain again. When she awoke, no more vomiting, no more crying.

She seemed fine the next several days except for some persistent diarrhea. I still figured she had a little stomach bug or something, so to be on the safe side, I didn't feed her any more solid foods for about a week. Then I tried it again. Oatmeal cereal and pears this time. Once again, she gobbled it all up.

And once again, two hours later, she vomited it all up. Just like the first time, she became rather lethargic and limp and pale. She vomited every 15 -20 minutes for about two hours again. Then, just like before, she seemed to perk up and wanted to nurse. I nursed her, and she was right as rain once again.

Now I'm thinking this is not just a stomach bug! So I took her to the pediatrician, who discovered she had an ear infection. She'd had a stuffy nose and a little cold, so the doctor said the vomiting was probably because of the ear infection. Antibiotics in hand, we went home and I decided to wait til the infection was all clear before feeding her any more solid foods.

We got the all-clear from the doctor about her ears, so I tried some more cereal with apples. She ate it all up gladly.

Then two hours later, she gave it all back to me and then some. Exactly the same scenario as the first two times. Now I knew something strange was going on and it had nothing to do with her ears. (All this time, she continued to have diarrhea which resulted in a terrible rash.)

Back to the pediatrician I went, and even the doctor was stumped. She agreed it was very strange, and referred us to a pediatric gastroenterologist at Children's Mercy Hospital. While we waited for that appointment, we did not give our baby any solid foods. We continued breastfeeding only. Thank God for nursing!

The night before our appointment with the specialist, I said to my husband, "Let's just try it one more time, just to make sure. Maybe it was a weird fluke or something and we don't really need a specialist." He agreed, and so I fed her one single spoonful of rice cereal. One little baby spoonful.

Guess what happened?

So, later that night after my sweet daughter had finished throwing up and was feeling better again, I finally went looking for some answers. (Why I waited so long is a mystery even to me.) I sat down and Googled, "my baby throws up every time I feed her solid food".

The very first search result left me speechless. As soon as I began reading the information on this website, I absolutely knew this was what was wrong with my baby. I began printing the information to take with me to our appointment the next morning.

I also typed up a thorough history of exactly what had been happening to my daughter, with as much specific detail as I could, and I presented it to the specialist. She walked in our room, having already read the history I'd written, and I said, "I'm not trying to do your job for you, but I did some reading last night, and I think my daughter has FPIES," as I handed her all the information I'd printed off.

She just smiled real big at me, reached into her file, and handed me the exact same information. She and I had come to the same conclusion: my baby has FPIES.

So, what the heck is FPIES? I'd never heard of it before, and chances are you haven't either. It's even quite possible that your pediatrician hasn't heard of it, or seen a child with FPIES.

It stands for Food Protein Induced Enterocolitis Syndrome. (And it's pronounced just like you think, F-PIES.)

It is a reaction to food proteins, like an allergy, yet unlike other food allergies. There is no single, definitive test for FPIES because it's not an IgE-related allergic reaction like other allergies, so standard allergy testing is not diagnostic.

The most common FPIES trigger food, believe it or not, is rice.

Other common trigger foods are oats, barley, milk, soy, eggs, chicken, and turkey. Any food can be a trigger food, but these are often the biggest culprits. Strangely enough, wheat does NOT seem to be a problem for kids with FPIES.

My daughter has Rice/Oats FPIES, which means no rice or oats for her at all. Which is exactly what I'd fed her with that very first spoonful of baby food. That's what all the doctors recommend. It's the standard advice everyone gives. "Feed your baby rice cereal." After all, rice is supposed to be the most agreeable, well-tolerated food on the planet. It's a staple ingredient in every country, in every diet around the world!

Not in our household, not anymore. No oats or barley, either. Since there were many months when the only food my daughter could eat was breast milk, I had to make some dietary changes myself. I eliminated rice, oats, milk, and soy from my own diet to make sure no trace of those foods made it into my milk. Better safe than sorry.

We are now walking the slow process of discovering which foods are safe for her to eat, and which foods will trigger a vomiting reaction in her and are therefore on the "Cannot Eat" list. The only way to find this out is to feed her one food at a time and see what happens.

She will not be allowed to eat grains of any kind for a few years, so this baking momma is going to have to get creative and learn some new tricks. (I have to say it was awful not to be able to make her a cake for her 1st birthday!)

In the meantime, in order to increase her caloric and protein intake, we have to supplement her limited diet with a specialized formula called Elecare, which is neither very tasty nor very affordable. Many parents of children with food allergies know this all too well. We're in good company.

The good news is that most children with FPIES will outgrow it by the time they're about 6 years old, and thereafter be able to eat a pretty normal diet without allergy concerns (based on what is known now).

We were actually pretty fortunate. Our daughter's reaction, while alarming to us, was not life-threatening. Some kids with FPIES have severe reactions that require emergency medical attention.

If our story sounds familiar to you, go to the FPIES Foundation website and read more. Print this article and take it to your pediatrician. Spread the information far and wide and help educate those doctors who haven't yet learned about this unusual infant disease.

Perhaps it's time to encourage our pediatricians to rethink the standard advice about feeding our babies solid foods at six months, and feeding them rice cereal.

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Jennifer Hartline is a grateful Catholic, a proud Army wife and homeschooling mother of four children. She is a contributing writer for Catholic Online. Visit her online at Wake Up,Deborah!

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