Jack's Story: Parent's Letter Project Eosinophilic esophagitis - Jack's parents

Our four-year-old son Jack has suffered from acid reflux since he was an infant. The Division of Gastroenterology, Hepatology, and Nutrition at Children's National was highly recommended as the best team in the area. Jack has been under their care since then. After more than three years of medication to treat gastro esophageal reflux disease (GERD), Jack began to suffer repeated bouts of gagging and vomiting during meals, and persistent stomachaches and pains. We knew this had to be more than just acid reflux.

On the suggestion of his gastroenterologist, Jack underwent an endoscopy with biopsy, which confirmed that he had a rare allergic inflammatory disease called eosinophilic esophagitis (EE). We are quite certain that without the guidance of Jack's doctors, we would not have moved forward as quickly as we have in treating Jack. The gastroenterologist and allergist educated us about the possibility that many of the foods Jack was eating daily were actually causing inflammation of the esophagus. The inflammation in turn, is what was causing the gagging and vomiting Jack was experiencing. We finally had answers. We learned the close relationship of EE to acid reflux, and the increasing prevalence of it being misdiagnosed as acid reflux.

Educate yourself so you can advocate for your child. Ask questions and don't be afraid to go above and beyond in finding the answers. We often felt as if we were pushing too hard to get more answers. But the team at Children's never left a question unanswered. Every answer you have is something else you can be doing to help your child live most successfully.

Seek out the best care and the best doctors who are educated and trained in the treatment of EE. At Children's, we found the best care in doctors who have trained with leaders in the field and who are on top of the latest research and treatments for EE. It's critical for you to find a team of doctors-gastroenterologists, allergists, and nutritionists-who will work together, to provide the most thorough managed care possible.

Find and use every resource possible. We were able to use our doctors at Children's to find associates and team members they work with who also are educated in EE. They helped direct us to journal articles with the latest research and web sites to connect us with other parents whose children live each day with EE.

You are likely very overwhelmed, and that's okay. It takes a while to sort it out and find your bearings to move forward. In looking at where we are just six months later, we've come so far. Thanks to the care of Jack's doctors at Children's, we've moved forward fast in finding a health plan appropriate for Jack. There's no way we'd be where we are without the guidance and advice of his doctors at Children's.

Sincerely,

Jack's Parents, Jon & Rosemary

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