January 20, 2011

Food Protein-Induced Enterocolitis Syndrome (FPIES)

January 20, 2011 - By KATE YORK Special to The News and Sentinel

The Arnold Family
MARIETTA - Braylen Arnold isn't your average picky eater.

The nearly 18-month-old Marietta boy does have screaming fits at the dinner table regularly, but they're rooted in what he can't have rather than not wanting what's offered.

Last spring, Braylen became one of only about 150 children in the U.S. to be diagnosed with food protein-induced enterocolitis syndrome (FPIES), a debilitating disease that mimics food allergies. Most children affected react to either wheat, rice, soy or dairy - Braylen reacts to them all.

"We have to keep him on a very strict diet," said his mother, Melissa Arnold. "He can only have (non-berry) fruit and formula. It's very hard because the older he gets, the more he wants to explore. He's fighting to have our food."

His parents, Melissa and Ben, had a fight of their own just to get their son diagnosed. Now, they're taking part in a benefit in Marietta Saturday that will help fund a Philadelphia Children's Hospital research study on FPIES, the first study of its kind in the U.S. Along with little research, there is no known cause and it's unclear whether it can be passed on.

"We don't want other parents to have to go through what we went through to get a diagnosis," said Melissa Arnold. "It's scary and it's sad to be a parent and feel that helpless."

Braylen was 3 months old when the couple fed him rice cereal for the first time and the symptoms began.

"He went to sleep immediately and then threw up for two hours," said Ben Arnold. "He was throwing up this yellow bile."

What followed was half a dozen visits to the local emergency room and to the family's physician and the frustration of parents knowing something is wrong with their child and being told it's not true.

"We got every diagnosis from the flu to a virus to that we were feeding him too much," said Melissa Arnold.

"None of the doctors knew anything about FPIES," said her husband.

For nearly six months, Braylen would be violently ill after eating, as well as sleepy and lethargic.

"I can remember a time when I was sitting on the floor with him and he was just limp," said his mother.

The family was eventually sent to Nationwide Children's Hospital in Columbus and to an allergist, who quickly diagnosed Braylen.

That began the little boy's new diet of $16-a-cup formula, dubbed "liquid gold" at the hospital, along with a few fruits.

"A typical day for him might be six to 10 cups of formula, a serving of olives for breakfast, an orange for lunch and three or four bananas," said Melissa Arnold. "It's hard to be creative. You can only cut fruit so many ways."

The toddler regularly visits Children's Hospital in Columbus and has patches, representing different foods, placed on his back to test for a reaction to determine whether the family can try to reintroduce any food item. So far, the only food he hasn't reacted to was corn, which was reintroduced into his diet just a few days ago.

"You can't imagine how excited he was," said Ben Arnold. "It was something different. It's one of the reasons olives are his favorite because they're not cold and sweet like the other fruit, but bitter and salty."

As long as he sticks to his diet, Braylen now functions like a healthy, normal 18-month-old with one exception. He recently began working with a speech therapist, due to minor delays in his speech development related to FPIES.

"He doesn't have different textures in his mouth like most children do," said Melissa Arnold. "He only eats soft, mushy foods and that can affect speech. He doesn't use his tongue very much."

Everyone around Braylen must be vigilant all the time.

"We'll be at a family reunion and everyone wants to hand him a chip or something," Ben Arnold said. "We have to explain it to everyone."

Evelyn Worstell, a member of Reno Christian Church, said no one there had heard of FPIES before Braylen's diagnosis.

"Everybody's known him since he was a tiny baby, and everyone wanted to help," she said. "And with the benefit, since it's for research, we're hoping to help a lot of kids."

The spaghetti dinner will be held from 4 to 7 p.m. Saturday at the Marietta Township Park and Recreation Center, with tickets $6 a person. It will include a silent auction, 50/50 drawing, country store and children's country store. Some of the silent auction prizes include six Ohio State tickets and two Bristol Motor Speedway tickets.

Doctors are hopeful he will grow out of the condition between the ages of 3 to 5, as many children do, and until then the family will be grateful for their rosy-cheeked, active little boy, said Melissa Arnold.

"Some children have even more severe reactions, like shock or low blood pressure or they have to have feeding tubes," she said. "This is difficult, but he gets to function as a normal 18-month-old. He has no limits."

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