We always thought there had to be something going on with Brynn, as she would have these random hours where she would just scream. I talked to our pediatrician and was told she was just a colicky baby. I was nursing while at home and pumping/freezing while I was at work, so I never really paid much attention to what I ate. With those “colicky” moments, I would always try to figure it out and I eliminated the foods I thought were normal to eliminate-broccoli, spicy foods etc. Her first major FPIES reaction was when she was about 6 months old. She had the rice cereal a couple times previously, but didn’t appear to like it. The next time I gave it to her, I mixed it with peaches so it would taste better. Exactly 2 hours later, she was projectile vomiting. After a full hour of vomiting, which was now completely bile, she went to sleep (or so I thought). She would somewhat open her eyes to dry-heave, and then would be out cold again. I thought she was just exhausted from all the throwing up and figured she had the flu.
We waited about a week and tried the rice cereal with sweet potatoes. Exactly 2 hours later, the vomiting started again. Same exact thing as last time, except the vomiting lasted a little longer.
I knew something had to be wrong. I called the doctor and we got in the next day and were sent to the hospital for an upper GI. Everything was clear, but something was obviously wrong, so they referred us to a GI specialist. We couldn’t get in for over a month, so we just waited and didn’t give her anymore solids. One night, we just decided to try it again. I’m not sure why, but we did. I gave her sweet potatoes (no rice). She was fine. A couple days later, peaches. Perfectly fine. Then it hit me. It was the rice cereal. Not knowing how severe the reactions actually were, we gave her rice cereal again. Like clockwork, the vomiting started. Once she calmed down and went to bed, I googled “vomiting rice cereal” and came across the term FPIES. Wow, it fit PERFECTLY. Right then, I knew that this was it. This is what was going on with our little girl.
I did my research and met a few wonderful moms, who pointed us in the right direction and confirmed my thoughts on the diagnosis, but also told me that getting a diagnosis may be difficult. Danny and I went to our GI appointment, and at the end, he said it was just reflux, and handed us a prescription as he walked out the door. I stopped him and asked him about FPIES and he said it absolutely can’t be FPIES because she didn’t have blood in her stools.
I immediately went back to my amazing moms and they directed us to an allergist who was familiar with FPIES. I called right away, and he diagnosed her within minutes of hearing our story.
Our next big step was heading out to New Jersey to see a doctor and possibly get more information on Brynn’s condition. We switched from a regular Enfamil formula to EleCare Vanilla and we also started a probiotic. She immediately started passing food trials after so many previous fails! EleCare was a lifesaver for us.
We haven’t had any more vomiting reactions, but have had plenty of fails. We consider a food a fail if it causes any pain; whether it be an awful tummy ache, horrible eczema, very disrupted sleep, or awful diapers, including a painful rash. We currently don’t have a pediatrician on-board with the FPIES diagnosis, so our go-to doctor is a functional medicine doctor who really wants to help.
Aside from the limited diet, Brynn is your typical 17-month old! She has such a wonderful personality and is a little social butterfly! She loves her big brothers and wants to do whatever they are doing, including getting into trouble. Chronic illness or not, she is absolutely perfect. We have a strong, beautiful little fighter, who WILL conquer FPIES.
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Page published: June 19, 2012. Copyright © 2012,The FPIES Foundation