Not just a fear of food: Boy who refuses to eat has rare disorder

Not just a fear of food: Boy who refuses to eat has rare disorder

BEAVERTON, Ore. – In most ways, Jayden Preston is like any other preschool kid.

But during snack time, it’s obvious what’s different about the five-year-old boy. While the other kids indulge, Jayden looks for distractions. He plays with the spoons, but doesn't use them.

When his teacher asks the class to draw a picture of what food they would want to fall out of the sky, Jayden draws “a messed up blue pizza to look at,” he says.

We brought you Jayden’s story last year and showed you how his parents went to extreme measures just to feed him. They thought he was afraid of food.

Jayden showed us his “button”, which is a port his parents had surgically inserted in his abdomen so they could feed him through a tube four times per day.

His parents made that decision after Jayden had a seizure from refusing to eat for days.

One year later, as his family headed out to dinner at Big Al’s. It was clear that not much has changed. Everyone else in the family placed their order, but when it was Jayden’s turn his parents had to explain his situation.

“He doesn’t eat,” said his father, Josh Preston.

“It stresses him out,” said Jayden’s mother, Courtney.

His family used the TVs at the restaurant to keep him occupied while they ate. Jayden told us that food never smells good to him.

Since we saw Jayden last year, his family has learned their son’s condition isn’t just in his head, nor is it about being a picky eater. His doctors had him take a swallow test and used an x-ray to watch what happened when Jayden swallowed yogurt.

“It showed that when he tried to eat food it would pool in the mouth all the way up to the sinuses,” said Dr. Marcus Luce.

From there, some of the yogurt slid down his wind pipe, making him gag or vomit.

Jayden was diagnosed with Dysphagia, a swallowing disorder.

“It was very abnormal,” Luce said. “The gagging he was having was not purely psychological. There was an organic medical cause of that as well. I’ve never seen anything like this.”

“Everyone just kept saying ‘he’s afraid of food. He’s afraid. He’ll get over it. He’ll eat when he’s hungry,’” said Courtney Preston. “So finally we’re like, 'oh, there really is something wrong with him.'”

Jayden’s parents have tried several kinds of therapy since his diagnosis. Motivating him with money got him to swallow for a while, they said, but for now they’re letting him go at his own pace. Jayden said he’s been eating pudding, yogurt and apple sauce, but he didn’t like the apple sauce.

“It tasted a little weird,” he said.

Jayden will start kindergarten in the fall. His dad is worried about how the other kids will treat his son.

“It makes you wonder what he’s going to go through when he goes to school,” said Josh Preston. “Other kids can be mean, they can pick on him. I worry about that. That’s the scariest thing for me.”

Jayden’s parents hope that one day food won’t feel like an enemy.

“We tell him all the time, ‘this is not forever, Jayden. One day you will eat and we’re going to keep helping you and work with you. We all eat with our mouths. This is not the norm,’” said Courtney Preston.

“I think it might be a few more years,” she said. “But it’s all up to him.”