When our son, Brennan, was four months old I introduced a small amount of rice cereal to his formula. About 2 hours later our baby was extremely sick, inconsolable and pale. We rushed him to the emergency room where he appeared to lose consciousness. The first of countless tests were run, an MRI was performed and the results were inconclusive, but their best guess was that our son had Meningitis. He was transported to a nearby hospital that had a Pediatric floor. We spent that night, the next day and the next night in the hospital with Brennan while he received fluids and more tests were performed. We were checked out with a ‘guess’ of an allergic reaction or possibly Rotovirus and a referral to a Pediatric Neurologist. Months went by with horrible procedures done on our baby with no real diagnosis and multiple frightening misdiagnoses and ‘best guesses’. Night and day we were on the computer researching…looking for anything at all to explain what was going on with our baby. Every time it was time to eat we were terrified that it would happen again. And it did, several times over the next year. I began to keep an Excel spreadsheet of the ingredients in all of the foods that he could tolerate as well as all of the ingredients in the foods that caused a reaction. I would highlight the common ingredients on the reaction foods and it seemed as though rice was the culprit. Rice, rice flour, rice starch, rice tapioca. A classic allergy test was performed and came back negative for rice. One day I got a phone call from my husband telling me that he was pretty sure that he found what was wrong with Brennan. It’s called FPIES, he told me. Never heard of it, neither had he. Neither had anyone, including our doctor!  

We found a different Pediatric Gastroenterologist who accepted our insurance. For the first time since this nightmare had begun, a doctor truly listened to us and was interested in what we had to teach him. He had heard of FPIES in medical journals but had never actually seen it in his practice. He was fascinated by our little boy and asked permission to document and share his findings. He went on to tell us that basically, the only cure for FPIES is to keep the culprit food from our son and hope that he grows out of it by the age of three, as he told us most FPIES kids do. He also told us that the only way to know for sure if Brennan had grown out of FPIES at the age of three was to give him the food that made him deathly ill and see what happens. A food challenge. So that’s what we did.

For the next year and a half we read every single ingredient on every single thing that we gave him and we questioned restaurants about their ingredients, (by the way…since rice is not a “classic allergen” some restaurants and labels don’t have to list it). We found that out the hard way when Carl’s Jr. changed their fries and began coating them with rice flour for crispiness. So when Brennan turned three years old we sat him at the dinner table across from his older brother who just about had a meltdown when he saw us put a small spoon of rice on his little brother’s plate. Brennan loved the rice. We all held our breath. One hour. Two hours. Three and then overnight with no reaction. Thank God! A few days later we tested him on two rice scoops. No reaction. I will say it again. Thank God! Slowly we began to introduce things to him a bit at a time that had been absolute no-no’s up until then. He was able to tolerate it all with zero reaction. The nightmare was over!

Brennan is now a ridiculously healthy and hearty ten year old that doesn’t remember a thing about his early trials but enjoys hearing stories. He plays football and is active in kickboxing. He eats everything. Now my husband and I tell everyone we can about FPIES, as it is still pretty unheard of and rarely diagnosed. We sure wish someone had known about it when we were looking for answers.

 

 

 

 

 

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Page published & last update: May 31, 2017. Copyright © 2012,The FPIES Foundation