After we got Carter on a formula his body could handle, we introduced rice cereal into his diet with the hopes of keeping more of his formula in his little tummy. We used Gerber’s rice cereal, which is the typical next step for all infants and recommended as the best first food. This is not the case in FPIES children. There are two things that are very wrong with the “logical” next step we took: Rice is a very common trigger in FPIES kids and Gerber is notorious for cross-contamination in their foods. Of course I knew neither of these things as I gave Carter his first helping of rice cereal. He got incredibly cranky and lethargic. It didn’t help his vomiting, just made it easier to clean up because it was thicker. It also made him horribly constipated. I assumed the crankiness was from the constipation. The FPIES flag still hadn’t gone off yet, but I knew something was wrong. I told the pediatrician, who seemed a little puzzled, but suggested we switch to oatmeal. At this point I started to do some research and found out about Gerber’s cross contamination issues with their rice cereal. So we switched brands to Happy Baby, which does not have any contamination issues. I tried their rice cereal and got the same results. At this point, we knew for sure that rice was a no go, so on we went to oatmeal. I used the Happy Baby oatmeal and Carter did great with that.
After the oatmeal success, we started introducing new foods, one at a time, a week apart. He seemed to be doing great with those. We also started giving him finger foods: crackers, pasta, puffs, teething cookies. It was the normal progression of foods.
Looking back on it now, he was never thriving, healthy and happy. I had no idea that he could be any different. He was leaps and bounds above what he had been on the other formulas and I thought this was his normal. The whole time he was having minor FPIES reactions, a build up was taking place in his body. Many of the foods we were consuming had trace amounts of soy in them. These trace amounts gave Carter a constant cold, over 5 months of running nose, cough, sneezing and watery eyes. The cough kept us up at night for so many nights. The runny nose would gag him in his sleep. Many nights, sleeping upright on our chest was the only way any of us got sleep. I was told that he was too young to have seasonal allergies and since his body wasn’t presenting signs of a typical food allergic reaction, there was nothing we could do. He was even diagnosed at one point with RSV and given inhalers because he was struggling to breath. We thought he had croup because his cough would worsen at night. The nights that his cough worsened, we directly related to what he had eaten during the day. I was starting to think that maybe we just had a sickly baby. His system was just sensitive to anything he was exposed. I still hadn’t linked it to foods though.
When we reached about 10 months old, the pediatrician suggested that we try to see if his body could now handle dairy. We were to start with yogurt and see how he did. I was so hopeful that he had outgrown his culprit foods. Carter was even tested by an allergist and he showed negative to dairy and soy. We gave him yogurt, and waited. He got cranky. And whiny. And incredibly constipated. “His body just needs time to adjust. Keep going”. Two weeks later and no bloody diapers, so we tried milk. He drank it like a champ! Within two hours he had a death grip on my leg. He was whining non-stop. There was nothing I could do to console him. I thought maybe it was teething. We gave him some more and waited. Then the diapers came. Mucousy, runny, bloody. Scary. Milk was a no go, again. Our oldest son couldn’t tolerate milk until he was 2, so this wasn’t new territory for us. We could do dairy free. I still felt like I had control of the situation.
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