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To Everyone Who Has Never Heard of Eosinophilic Esophagitis

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May 15, 2016 is the start of National Eosinophil Awareness Week. Less than a year ago, 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) in October 2015. With no warning we had to cut soy, wheat, milk, eggs, nuts and tree nuts, fish and shellfish from his diet. After six months of being seen by a gastroenterologist, a scope was finally done which led to his diagnosis.

EoE is one of many eosinophilic disorders that specifically targets the esophagus. Basically certain trigger foods cause a reaction 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 often missed and not diagnosed until far too much time has passed.

Anthony at his first scope and biopsy.
Anthony at his first scope and biopsy.

Our son had massive gagging and vomiting beginning when he was a baby. He had bouts of eczema that put him in the ER; I was told I had to stop drinking milk while pumping for him. He had projectile vomit from formula when I finally gave up pumping after seven months. He had projectile vomit from eggs. He had colic, restlessness and was a fussy baby. I had concerns, but this was my first child. Our pediatrician (who is generally wonderful) brushed my concerns off as those of a new mother, possibly overestimating the amount or frequency of vomit. I became pregnant with our second son about seven months after the first was born, and we were just trying to get through the day.

Our son was nonverbal until he was past 3 years old. Again my concerns were brushed aside, and early intervention told me he would qualify for speech therapy, but all of “the rest” of what I was seeing must be in my head. After a long journey, he was diagnosed with autism, generalized anxiety disorder and sensory processing disorder, but that is a story for another time. After he turned 3 and started having bowel issues again, I was told 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 various treatments, his gagging and vomiting was occurring more and more frequently. A scope and biopsy was ordered, and the rest was history. Eosinophil diseases are so rare and understudied that the only treatments are taking foods out and scoping over and over again to search for the trigger.

The diagnosis was just the beginning. We went four months with a stronger reflux medicine and the top eight allergens removed from his diet (soy, wheat, milk, eggs, fish and shellfish, nuts and tree nuts). During those four months, we had to deal with Halloween, Thanksgiving, family trips, Christmas, school parties and 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 grab something at a restaurant or drive-thru, not even fruit or salad due to the risk of cross-contamination. Imagine a child who has to eat “special food” during snack time 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.

At the end of February, somehow we had a clean scope! But that isn’t the end, or even close. Now we knew one or more of those eight foods was his trigger. Some unlucky families have to go far beyond the top eight 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 per month, or even go to a feeding tube. So far we have been lucky. This past 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 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.”

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) and the Cured Foundation.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

Originally published: May 17, 2016
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