A life without food

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Eric Brown, 6, suffers from a condition known as eosinophils of the esophagus (EoE) that prohibits him from eating almost all foods. Eric Brown, 6, suffers from a condition known as eosinophils of the esophagus (EoE) that prohibits him from eating almost all foods.

Tuckahoe boy has painful reaction to most foods

By COLUMB HIGGINS
Staff Writer
TUCKAHOE – Eric Brown, of Tuckahoe, a six-year-old boy with eosinophils of the esophagus (EoE) cannot eat the foods that other boys and girls his age enjoy. Summer staples like hotdogs and ice cream, and just about anything else, can cause an allergic reaction that hurts his throat and stomach.

For most people, it is difficult to imagine a life without food. It is a part of almost every aspect of our lives. For Eric, though, it is just another day.
Last week was National Eosinophilic Awareness Week, which aims to raise awareness about the condition that can affect children, teens or adults. Eric’s mother, Ellen Lepping, has been trying to raise awareness on her own, with Upper Township teachers and parents, as she prepares her son to enter first grade the Upper Township Primary School in September.
Eric suffers from a very severe case of eosinophils of the esophagus, said Ellen. He cannot eat anything except for applesauce and sweet potatoes. He gets most of his nutrition from a powdered formula that he drinks several times a day, she said.
“Eric has one of the more severe cases,” said Ellen. “Some people diagnosed with EoE can’t eat one or two things. They only have to eliminate a few foods. We had to eliminate everything. The special formula is very elemental. The body can’t react to it. It doesn’t smell very good. If you were an adult just starting out drinking it, it would be very difficult.”
The formula is $40 a can, more than $2,000 a year, and is not covered by insurance in New Jersey.
As an infant, Eric would cry all day long, said Ellen.
“I was trying to juggle the house and kids,” she said. “I had four other kids so I knew it wasn’t normal. He was in a lot of throat and stomach pain, I imagine, but he couldn’t use words to tell anyone. We didn’t know what to do.”
At first, pediatricians thought Eric suffered from a milk allergy, but he was later diagnosed with EoE at Children’s Hospital of Philadelphia (ChoP). It took months to get the proper diagnosis because most doctors aren’t familiar with the condition, said Ellen.
“Doctors are becoming more aware but it is little known,” she said. “It can pop up at any age. It seems there is a lot more vomiting and failure to thrive in children. Teens and adults may notice trouble swallowing, or need to go to the ER with a food impaction.”
Along with EoE, Eric also suffers from deadly food allergies, said Ellen.
Eric has undergone some food trials to determine what he can eat. He will eat one particular ingredient for eight weeks and then be biopsied. If there is no reaction, that food is a pass, said Ellen.
So far, the only foods that do not cause a reaction are applesauce and sweet potatoes. That is frustrating for Eric, who is just beginning to realize he is different from other kids, said Ellen. It’s also frustrating because he loves to watch the Food Channel and bake, she said.
“He says when they cure EoE he is going to eat everything in the refrigerator and the freezer,” said Ellen. “He loves to watch the Food Channel and he likes to bake. Maybe it’s because he knows he can’t have those things that make them so attractive.”
EoE is genetic, and two of Eric’s relatives have been diagnosed. Doctors have told Ellen that they don’t expect him to outgrow it.
“This is something he will probably live with for the rest of his life,” she said.
About 1 in 1,000 people are affected by EoE, about 200,000 Americans, according to CURED, a foundation urging research of eosinophilic diseases.
“But he’s a very smart kid, very social,” said Ellen. “He’s very happy. But he’s getting aware that he’s different. He is asking why he can’t eat the foods other kids eat.”
The Upper Township school system is very willing to work with Eric, said Ellen. She met with the primary school nurse last week and made arrangements for Eric next year. This year he was homeschooled, she said.
The plan is for Eric to drink his formula two to three times a day in class. He will also take part in the lunch period with other students. Eric will sit at the peanut allergy table, said Ellen.
Eric has two sisters, Courtney Lepping, who is graduating Ocean City High School this year, and Kimberly Brown, who attends seventh grade at the Upper Township Middle School. His parents, Ellen and Bill Brown, live in Tuckahoe.


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