If you’ve been following my little family’s story, you know that my little guy has struggled with food allergies from almost the very beginning. He reacted to foods I was eating well before he was ingesting anything other than breast milk. He had intestinal reactions, including bloody, mucous-filled diapers and developed eczema all over his torso.
I decided (and ran it by the pediatrician) to cut dairy products from my diet, which really didn’t change much. So, next I eliminated soy, and we saw a GI who recommended we keep eliminating the top 8 allergens, one at a time, until Baby Guy’s symptoms went away.
*I’ve interspersed links to a few older posts from the beginning parts of this journey, in case you are interested in the earlier part of our story and haven’t read it before.
Getting rid of dairy, soy, and wheat solved the eczema, but nothing else. Since his diapers were looking worse and worse, we did stool testing, which didn’t give us much help, other than to rule out infections and a couple of other possible issues.
Anyway, because of the symptoms worsening, the GI advised me to stop breastfeeding and put the little guy on a hydrolyzed formula (Nutramigen). Transitioning from breast milk to formula was harrowing for a few days, but we made it through and eventually had success with the bottle.
Once Baby Guy was drinking his formula and all of the breast milk was out of his system, he started sleeping a bit better, his intestinal bleeding stopped, and things looked up for the most part. However, he started having terrible yeast diaper rashes.
Then, starting solids at 6 months didn’t go very smoothly, as Baby Guy refused to eat almost everything for weeks, even months. Then, once he actually did start eating better, he started in with the mystery hives.
After about 2 months of hives, we figured out that green peas were the culprits, so we eliminated them from Baby Guy’s diet, and he’s been free of that affliction ever since.
At 12 months, Baby Guy had blood allergy testing done, and they all came back negative. I felt like a crazy person. Thankfully, our pediatrician listens to us, and she referred us to an allergist, and just after Thanksgiving, we were able to see him. He confirmed the decision we’d made to discontinue Baby Guy’s dairy, peanut butter, and egg ingestion (we’d added those on the advice of a nutritionist, and hadn’t seen dramatic issues, but little things had started to change for the worse), and gave us an answer.
It’s pronounced F-Pies, and stands for food protein induced enterocolitis syndrome. It’s a rare type of allergy (though becoming less rare all the time) that doesn’t usually show up in either skin or blood tests. In fact, there is no test that can confirm FPIES, so food challenges are the best way to determine whether a child has it. Most kids grow out of FPIES by the age of 4, but not all.
My son does not have an extreme case of FPIES, by any means. The symptoms he’s shown are very mild compared to a typical case, which is part of the reason why, though I’d read about FPIES a million times in my late night research frenzies, I never seriously thought he had it. A typical FPIES reaction occurs from 2-6 hours after ingestion of a trigger food. Profuse vomiting (to the point of shock, in many cases), a drop in body temperature, high white blood cell count, and often diarrhea are all part of what is called an acute reaction.
Baby Guy has never had an acute reaction (for which I am unendingly thankful). His are referred to as chronic reactions, which involve diarrhea, sleep disturbances, intestinal bleeding, and poor weight gain. A lot of chronic reactions also involve some vomiting, but we haven’t had that problem.
So, as you can imagine, an FPIES diagnosis was a lot to wrap our minds around, but I’m going to be honest and tell you that I was a bit relieved that I wasn’t insane and imagining everything. The allergist was so kind and reassuring about the steps we’d taken throughout Baby Guy’s babyhood to feed him successfully, and he was and has continued to be so very helpful and patient with me, taking time to answer all of my questions.
There’s a lot more to say on this subject, and I’ll be writing more about it soon. I am so far from being an expert, or even moderately knowledgeable about FPIES, but I’m learning more each day, and I hope sharing our story might help another mom or dad who’s up at all hours googling symptoms and getting nowhere.
For us, FPIES isn’t something we have to focus on 100% of the time, because Baby Guy’s case isn’t extreme, and he’s never had a life-threatening reaction. For too many families, though, life-threatening reactions are a constant worry. Thanks for reading my very long post, and if you would, please include families who are living with FPIES in your thoughts and prayers.