Today, May 15, 2016 is the start of National Eosinophil Awareness Week. Prior to October I would not have known what that means, or what it could mean to a family.
Our older son was diagnosed with Eosinophilic Esophagitis (EoE) back in October 2015. With no warning we had to cut soy, wheat, milk, eggs, nuts and tree nuts, and fish and shell fish. After 6 months or so of being seen by a GI (years after I tried to get a referral) a scope was finally done which led to his diagnosis.
What is EoE? It is one of many Eosinophilic Disorders that specifically targets the Esophagus. Basically certain trigger foods cause a reaction over time that can become life threatening. It appears differently in all patients, but usually involves gagging and vomiting, stomach pain, bowel issues, and more. The diseases are generally managed by food avoidance, medicines, and even feeding tubes if the patients lose too much weight. These diseases are very rare and are often missed or not diagnosed until far too much time has passed.
With our son, there had been massive gagging and vomiting since he was a baby. He had bouts of eczema that put him in the ER, only to be told I had to stop drinking milk while pumping for him. He had projectile vomit from formula when I finally gave up pumping after 7 months. He had projectile vomit from eggs. He had colic, restless, just a fussy baby. I had concerns, but this was my first child. Our pediatrician (who is wonderful) brushed my concerns away of that of a new mother, possibly overestimating the amount or frequency of vomit. I became pregnant with our second son right about 7 months after the first was born and we were just trying to get through the day.
Our son was non-verbal until he was past three years old. Again my concerns were brushed aside, and early intervention told me he would qualify for speech, but all of “the rest” of what I was seeing must be in my head. [After a long journey, he was diagnosed with Autism, General Anxiety Disorder, and Sensory Processing Disorder as well, but that is a story for another time]. Once he turned three and for the second time was having bowel issues and stool leakage, I was told that it was behavioral and there wasn’t anything the pediatrician could do. I wouldn’t accept that and we finally got a GI referral.
After months of trying things like Miralax (which solved his bowel issues) we were still getting gagging and vomit and it was occurring more and more frequently. A scope and biopsy was ordered and the rest was history. Except what sort of reality is this? That was not the final answer. Eosinophil diseases are so rare and understudied that the only type of treatments are taking foods out and scoping over and over again to try and find the trigger. What sort of future is that for a small child?
Let me try and tell you. We went four months with a stronger reflux medicine and the top 8 removed from his diet (soy, wheat, milk, eggs, fish and shell fish, nuts and tree nuts). During that four months, that I hadn’t planned for, was totally unprepared for, we had to deal with Halloween, Thanksgiving, family trips, Christmas, school parties, and PLENTY of people who thought we were “helicopter food parents. ” This adjustment was one of the hardest our family has had to make. Imagine not being able to EVER just grab something at a restaurant or drive through. Not even fruit or salad due to the risk of cross contamination. Imagine a child who has to eat “special food” during snack at school, and teachers who have 18 kids and no matter what they try to do accidents happen. Within the first month our son had gotten the wrong food at school twice. If he had been anaphylactic the consequences could have been so much worse, but instead we had to start our elimination diet over. Twice.
But at the end of February, somehow we had a clean scope! But that isn’t the end, or even close. Now we knew something (or more than one thing) of those 8 foods was his trigger. Some unlucky families have to go far beyond the top 8 to find their trigger. What’s next? Well we start over a year of food trials. We have to re-introduce one food at a time, and scope between each trial, to see which one, or ones are the trigger foods. We have to monitor weight and height monthly, because if weight starts to drop we have to first try a elemental formula that costs about $400 a month or even go to a feeding tube. So far we have been lucky. This last month his weight dropped a little bit but otherwise we are actually having weight gain. He is finally not throwing up and this plain (expensive) food is making him feel so much better.
We hope to figure out which foods are the trigger within the next year. We also were told to do allergy shots for his environmental allergies, and told that may help with the EoE as well. But no one knows for sure, and right now I think he has enough on his plate.
So why am I explaining this to you? I just want you to think twice before you roll your eyes at the mom who brings her child their own cupcake to the birthday party. Understand why someone is taking so long in the grocery isle, reading every single label they put into their cart. I want you to think about your judgment when you tell someone “just once won’t hurt.”
But most of all, the theme of National Eosinophil Awareness Week is Education. Please take the time to learn about these diseases, especially if someone you know is dealing with them. There is information available at Apfed (American Partnership for Eosinophilic Disorders) at http://www.apfed.orf or even with the Cured Foundation at http://www.curedfoundation.org . #NEAW2016