“What is in your mouth?” I asked my pre-school son, assuming it was paper. His brother had eaten the corner off of many coloring pages when he was in Pre-school, so I was about to enter into lecture mode as I had done with big brother so many times before. The answer to my question set us off on a journey that I never imagined.
“Breakfast,” he replied.
“Breakfast?!? We ate an hour ago. How are you chewing on breakfast?” I asked.
He, of course, had no problem showing me the undigested food in his mouth to prove he wasn’t lying. I began to notice this trend and because I taught next door to his classroom, I tried to pay more attention. When I brought it up casually during a sibling’s appointment, the doctor asked me to take notes, and we made him his own appointment.
Rumination was the first suspect. Since this is a behavioral issue, we tried to talk him out of spitting up his food. I did not want my baby to have to get a scope if I could help it. If I had to scare him into chewing his food and keeping it down, then so be it. That plan didn’t work. We tried dairy free with the help of almond milk, almonds, and almond butter. We tested him for celiac disease and several other issues that I can’t recall. Everything came back negative. However, after letting him try goldfish crackers at snack one day after having given up on dairy-free, he threw them up all over the floor within minutes. I had a teacher watch my class while I called the doctor.
She referred me to a specialist. We had our appointment with the specialist who had him begin meds for reflux. He did this for several months before we did a scope and biopsy. The scope and biopsy confirmed Eosinophilic Esophagitis. Some direction!! Now to find out which foods were causing his throat to swell and to build up white blood cells. That doctor referred us to an allergist.
As is often the case with EoE, my son reacted to not one allergen on the skin prick test at the allergist. Nothing. Nada. He at least reacted to the control histamine which told us only that the test worked but gave us no direction. The PA suggested the patch test. We had food particles taped to our son’s back from a Monday to Wednesday to see if there was a delayed hypersensitivity to any foods. My son reacted to milk, soy, almonds, peas, turkey and sesame. Finally!! Some direction. And some guilt for having given him so much almond when we were trying dairy-free.
We eliminated all of these foods from his diet. ALL of them. Completely. I wanted to take out even more, but the doctor didn’t recommend it. He didn’t say that exactly, but he gave me that sideways, raised eyebrow look like I was being ridiculous. I took it as a ‘no.’ After several months on our restricted diet, we scoped again after a couple months off of all meds.
There were zero eosinophils this time!!! For him, the diet was enough. There was still healing needed from reflux, so he we went back only on the reflux medication with continued restricted diet. At some point, we might be able to trial these foods one by one, but that requires more scopes. I’m not ready to make him go through that.
Before the diagnosis, I had never heard of this disease. Until a cure is found, he will not outgrow it. We will manage it. At this time, we are limited to two restaurants and a strict diet at home. Some children who have this disease have only one to six ‘safe’ foods, liquid diets and/or feeding tubes. My son is only eliminating six foods. It may seem tough, but when you see my little one, say a prayer for all of those children who have unseen diseases. They often hear, “But you don’t look sick,” and it might be hard for them to explain their troubles. To be honest, I wonder how many adults have this disease without knowing it and how many people have died from food impaction before this disease was discovered a couple decades ago. Many doctors aren’t as persistent as my amazing pediatrician who didn’t give up until we found answers.
I want to close with two thoughts. First, my son is loved and included by his teachers and friends. I couldn’t do it without them. I couldn’t leave him without knowing that he might eat foods that could make his throat close up. It is hard on them in the classroom and yet they include him with grace and love. Thank you for showing him the love of Jesus daily! Secondly, I don’t know where I’d be without CURED. The support I receive there from others in this boat is a blessing I can’t describe. This non-profit provides support to the EGID community and donates millions to research.
Today is rare disease day. Check out the CURED website for more information about the disease and how you can help.