Impact of Eosinophilic Esophagitis Extends to School, Learning, Advocate Says

Education and the ability for a child to learn can be affected when a child has eosinophilic esophagitis (EoE), explains Colette Romero, whose son has the disease.

Transcript

How is school different for children with eosinophilic esophagitis (EoE)?

So when my son went into public school, into kindergarten, we had just graduated from the 1-month feeding program at Children's Hospital of Orange County, where he had great success and had gained a lot of weight. Going into kindergarten, it was a very big change. There were a lot of stressors and stimuli and the last thing he wanted to do was eat. He wouldn’t eat. And he lost a lot of the weight that he had gained. We tried to work with the public schools to get him some support but they said, “We can't do it.” And he would just come home, and he was so exhausted, he was so hungry, he was so overwhelmed by all of it. And so we kept trying to work with them but, ultimately, we did have to hire a special education lawyer to help us to get an IEP [individualized education plan]. And through that process, we were able to get an aide to assist him during meals to ensure that he was getting adequate nutrition. Because without that encouragement and support, he was not able to even concentrate. He was falling behind in school because he was starving. They had to monitor and make sure he was eating, drinking his shakes, and eating enough calories; that his attention could be held during class and he could participate because he was starting to have some behavioral issues, just because he was hungry, and he couldn't focus. And so that was a really big deal. Again, expensive and something that took a lot of time and advocacy. But I think it was very important for the school district to understand what EOE is and how it impacts his life and just what he needed to be able to succeed in that environment. And so now he's in third grade. And we now have a 504 [plan] which talks about making sure that he drinks his shake every day and just making sure that he's safe with sitting at a different area where he doesn't have exposure to peanuts and tree nuts. And the doctors are well aware of all of his allergies, and how they impact him and the symptoms he might exhibit. So that that has been very, very impactful on us as well.