Introduction

I’m starting this blog in order to share my family’s experience with FPIES. Like most people, I had never heard of FPIES. It wasn’t until my younger daughter started showing symptoms that I became aware such a condition existed. When she was five months old her pediatrician gave us the okay to start trying solids. The first thing on the list was rice cereal. My older daughter had started eating rice cereal at five months and never had a problem. In fact, as far as I know, she has no food allergies. So it didn’t occur to me to worry about my younger daughter starting to eat rice.

            We started with about a tablespoon and she ate it happily. She seemed enthusiastic about this new form of food and I was happy to see her take to it so well. About three hours after eating it she started to spit up a lot. I was a little worried because usually the major spit up happened closer to when she’d eaten. She had always been big on spitting up. She had been drinking breast milk exclusively before being given the rice cereal and she always spit up at least a little.

            I decided it must have been a fluke and gave her rice cereal again later that week. This time she didn’t just spit up three hours later, she started to vomit. It was very quick and I almost doubted whether it had been vomit, I was so used to seeing her spit up. But this time had been different, her face was different. She looked like she was gagging.

            I was very confused. I looked at the ingredients in her rice cereal and noticed it wasn’t just rice. There were a few other things in there. Perhaps I should try a different variety of cereal. I got some organic rice cereal and tried again. This time when she began to vomit my sister was with me. She agreed that it wasn’t just spit up, the poor child was gagging and coughing.

            I thought maybe she’d gotten a stomach flu. My older daughter had been sick the week before. Maybe it just took longer for the baby to get it. I took her to the pediatrician and explained what happened. The doctor said she didn’t think it was a flu, stomach viruses had much faster incubation periods than a week. She thought my daughter was allergic to the rice. She told me not to give her any more for the time being.

            I did as she asked but I couldn’t really believe her. I mean, who’s allergic to rice? I thought maybe the other ingredients in the rice cereal were to blame. Some of them were derived from corn, maybe she was allergic to corn. At least I’d heard of people being allergic to corn. Except that when I tried oat cereal, I got the same response. Three hours after eating it she vomited. Same thing happened when I tried sweet potatoes. I was beginning to get very worried.

            I went ahead and typed in the things she was throwing up in to a search engine. The acronym “FPIES” popped up several times. I read through the description and thought that it couldn’t be right. The articles said that children with FPIES would vomit to the point of dehydration and that would send them in to shock. My daughter had been fine after vomiting. She always seemed fine right after. What I didn’t realize was that FPIES builds up. The reactions can start small the first time a child eats a food but then it gets progressively worse.

            I decided to just avoid the foods she’d tried already and move on to simpler things. I started with steamed, pureed apples. Those seemed to go down fine. I tried pears. Those were okay too. Squash was next and she ate it all up, no problems. I started wondering whether I had exaggerated her reaction to the other foods. Maybe she’d been too young. She was a few months older by now, I figured I could try something heartier.

            After speaking to the pediatrician I decided to try a meat. Chicken seemed reasonable so I got some at my local Whole Foods. With all the problems she’d had so far, I wanted organic chicken so I could avoid reactions that might be caused by additives or whatever else. The first time I gave her chicken she seemed fine with it. I only gave her a tiny bit. The second time I gave it to her mixed with butternut squash. A few hours later she spit up a lot of squash colored guck. I started to get worried so I stopped the chicken. For about a month I just gave her squash, apples, pears and her breast milk.

            Since she had always been a big spitter I had started a journal of what I ate so that I would know if perhaps a certain food made her spit up more. I had noticed that she always seemed to spit up a lot after I had eaten my favorite fast food meal: grilled chicken, rice & corn. Before I knew about the rice allergy I had thought perhaps I was imagining the pattern, but afterwards I realized it must have been the rice. I didn’t really think it was possible for a kid to be allergic to chicken.

            I was wrong. After a month or so of avoiding chicken, I decided I was being crazy. I bought her some chicken and put it in her squash. That was the worst thing I had done in a long time. Three hours after eating it she started to vomit profusely. She wouldn’t stop. Hours passed. She’d seem okay for about twenty minutes then start vomiting again. I was on the verge of taking her to the ER when it finally stopped. A few hours later she seemed fine again.

            That was it for the chicken. It was also the last time that I doubted myself. From then on, whenever I’ve given her a new food, if she spits up even a little I don’t try it again. She hasn’t had any more major reactions yet, but I’m guessing that’s because I have been very cautious. Every time we start a new food I only give her about a teaspoon to begin. If she spits up, if she wakes up crying at night with no explanation like a tooth coming in or an illness, I stop the food.

            She is 20 months old now and we have gotten a pretty good list of safe foods. She can eat eggs, russet potatoes, Yukon potatoes, quinoa, beef, red beans, apples, pears, peaches, bananas, squash, spinach, carrots, sugar, maple syrup, canola and olive oils. I haven’t tried any spices yet but that’s on my list of to-dos. My main goal is to find good foods she can eat.

            As you can imagine, feeding a 20-month-old such a limited diet can get difficult. She gets bored, she doesn’t like some things. She wants to eat the foods her sister eats. I know it’s only going to get tougher once she’s bigger and can tell me exactly what she wants but can’t understand why I won’t give it to her. It’s going to be tough but that is part of the reason I decided to start this blog. Every day I think of new things I can give her. I try to cook them in different ways. That’s going to be the main focus of this blog: sharing the recipes and ideas that I’ve come up with, many of them inspired by other parents of FPIES children. I hope that if you’re reading this and you have a child with FPIES you will find the recipes and ideas helpful.