This week is Food Allergy Awareness Week, so I decided to share my family’s story of having a child with severe food allergies. My youngest has FPIES, the full name being Food Protein Induced Enterocolitis Syndrome. Which basically means he can’t eat food like the rest of us. I knew since he was born that something was amiss. In the hospital hours after his birth after each time I nursed him he would spit up. I told my nurse that he was spitting up quite a bit, they assured me that since I had had such a short labor and delivery that he must of swallowed too much amniotic fluid. They said they needed to do a deep suction to help him out. I can still remember how much my poor newborn screamed from having that done. Things seemed better after, so we were discharged. Not long after being home he would still spit up all the time which is very uncommon for an exclusively breastfeed baby. I always had burp clothes and even baby blankets ready for his spit up. At about a month old I was told that the spit up was because of GERD, a reflux disorder that he would out grow by four months of age. I informed his doctor that it seemed my baby was constantly having diarrhea and that it had the oddest smell of buttered popcorn and that it also seemed mucusy. His doctor then told me that that is normal for EBF babies and that when he is three months old to start giving him rice in his milk to resolve it. I had a feeling something else was going on but his doctor must know better than me right. Well at about three months old we tried rice cereal and that’s when everything changed for us. A few days after introducing rice he had a reaction. It was exactly 2-3 hours after eating the food he would begin to vomit violently, he would go ghost white and become extremely limp and he would continue to vomit until he passed out. The doctors call this going into shock, which is very dangerous and can lead to a coma or death. Well the hospital and his doctor both dismissed us and said it was a stomach virus. Ya a stomach virus that would only occur when he drank the milk with rice, I knew they were wrong. We kept having issues with introducing new foods to him and just couldn’t take it anymore. He constantly suffered from diarrhea and had an odd color to him. It took almost a year for him to be diagnosed, his first year of his life was very painful and a struggle. His weight began to drop and he was looking very ill and unnourished. I knew something was wrong and wouldn’t take it anymore and we started to take him to Rady’s Children’s Hospital which is about an hour away from our home. We started to go there for any reaction he was having. There in the ER at Rady’s is where a doctor finally took notice and pushed us through to see a GI specialist. Right when we met with the GI specialist she looked over my sons ER history and listened to everything I had documented and she told us that it was very clear that he has FPIES. I cried I couldn’t believe we finally had an answer, for his whole first year I felt like a failure as a mother that I was doing something wrong and my poor baby was suffering. I felt so overwhelmed with relief that now we could finally start to treat his condition and learn how to manage it. The first step was to get his weight back up and let his insides start to heal a little. He was put on EleCare Medical Formula, this formula saved his life even though I continued to nurse him I began to follow a strict diet but the formula is what helped him heal, grow, and thrive. The next step was to start finding him safe foods. It takes about two weeks for us to know if a food is safe. At this time he still has a very large list of unsafe foods but I try not to focus on that, right now he has hit over 10 safe foods! Every time we pass a new food it is like seeing my Little Man hit a big milestone. His first birthday he had no treats and only three safe foods. Now with his third birthday coming up this summer we are so excited to plan out little treats for him with his growing safe foods list. Our FPIES journey is not over but we are pushing through and my son is now thriving and will continue to. I’m am still so grateful to the wonderful doctors at Rady’s who continue to help us.
I know this post was very long but thank you for taking the time to hear our FPIES story.