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Rare illness causes people to limit most of what they eat

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CNY/NNY/S. Tier: Rare illness causes people to limit most of what they eat
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A disease where some children can only eat white or brown rice and it's on the rise. Reporter Katie Gibas shares the story of a boy dealing with a rare illness in this edition of Healthy Living.

As soon as she stopped breast feeding, Jennifer Randall knew there was something wrong with her then 6 month old, Zayden.

"Within days, he had chronic diarrhea that wouldn't go away. We tried different formulas, different brands. From them on he lived with it every day," said Jennifer Randall, mother of a child with Eosinophilic Esophagitis.

It was a nearly a year and-a-half before Zayden was diagnosed with Eosinophilic Esophagitis or EoE, essentially an allergy to most, if not all foods.

"His body makes too many Esosinophils, or while blood cells, and what happens is it fights against the food. He has stomach pain, vomiting, diarrhea. It's every food. Right now, he hasn't passed any endoscopies. We've trialed different foods for over a year."

EoE became a recognizable diagnosis about 25 years ago. It's believed to be triggered by ingested foods or inhaled allergens but the exact mechanism is not completely understood.

"The presentation of the disease is variable. Some kids as young as a year or younger may present with reflux symptoms. They might throw up. They might not feed very well. The older patients present more severely with feelings of food getting caught," said Marcus Rivera, MD, Upstate Golisano Children's Hospital Pediatric Gastroenterologist.

According to the American Partnership for Eosinophilic Disorders, the incidence has been on the rise and it is now estimated that one in 2,000 children have EoE.

"There's a large number of patients diagnosed. The thinking is that it's a combination of the medical profession being more aware of it. Families and patients being more keen to seek medical advice and medical assistance and our ability to diagnose it," said Rivera.

Because EOE is a relatively new diagnosis and because it can present in so many different ways, it all comes down to symptom management.

"On top of diet avoidance, the current medications include antacids, so reflux therapies in the form of proton pump inhibitors and they also include swallowed steroids as a mainstay of therapy," said Rivera.

But the medications haven't helped Zayden. So for now, he lives on formula. Right now, they're trying to see if he can eat rice. In a few weeks, he'll find out if he can keep that in his diet.

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