Rare inflammatory condition keeps boy from eating - WAFB 9 News Baton Rouge, Louisiana News, Weather, Sports

Rare inflammatory condition keeps boy from eating

It may not seem like a big deal for a 7-year-old like James Delano to munch on potato chips for an afternoon snack, but it took years just to get to this point.

"The first time I had it, my tummy hurt and my chest," said James.

Since he was three years old, James has had problems with the way food makes him feel.

"James' primary symptom is chest pain and he just, his chest pain continued daily, multiple times a day and then they described it to us like he's feeling a heart attack," said his mom, Victoria.

At first his parents thought it was a virus that wouldn't go away.

"We were so alone in the beginning trying to figure out what his diagnosis was and where to go for the right treatment," Victoria recalled.

It wasn't until almost a year later that doctors finally diagnosed James with something called eosinaphillic esophogitis. It's an inflammatory condition where the wall of the esophagus becomes filled with large numbers of a type of white blood cell that causes chest pains.

At first, doctors tried steroids. That didn't work.

Next, they tried eliminating foods with top allergens. Still, James kept experiencing chest pains.

That's when the decision was made to swap out solids for a feeding tube.

"We knew that it was time and James knew it was time," said Victoria. "James was done he didn't want to eat anymore because it was just making him feel so bad."

About 16 hours a day, James and "Spiderman" are connected, the majority of his nourishment coming from the machine.

"It was like we had finally met our child for the first time in years," Victoria recalled.

After four months of a new kind of normalcy, it was time for solid food to come back in the picture.

But trying a new food is different for James than it is for most people.

In order for the food to pass the test, James has to eat a certain amount for at least a month. He then has to have an endoscopy and biopsies.  After four years, he's up to only six safe foods: Carob, ham, broccoli, potato chips, grapes and quinoa.

"I just have to sit with these ingredients and figure out what I'm going to do with broccoli and pork and grape," said his mom.

It may sound like a Food Network challenge, but for this family it's their usual routine. And it's one they'll continue day in and day out until a cure is found.

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