Upstate boy can only eat 4 foods

GREENVILLE, SC (FOX Carolina) –
Four foods – that’s all one Greenville boy can eat. If he veers off his strict diet, he gets painfully sick.

“When you eat some bad food, it hurts your belly,” said 6-year-old Giles Martin Schanen.

For Giles, almost every food is a bad food. He is living with a rare disease called Eosiniphilac Esophagitis.

Dr. Jonathan Markowitz, with Children’s Hospital of the Greenville Hospital System, diagnosed EE in Giles.

“When you eat foods you’re allergic to, it causes this allergic reaction to the esophagus, which then leads to numerous symptoms which can be anywhere from abdominal pain to symptoms with acid reflux to a feeling of stuff coming up your throat, vomiting,” said Markowitz.

Not long after Giles was born, it was obvious that something was wrong.

His mother, Christine Schanen, said, “For three years, he lived with chronic abdominal pain, horrible diarrhea, reflux until we were referred to a gastroenterologist for a work up.”

Then, Elaborate allergy testing revealed, only seven foods were safe to eat.

Three years later, Giles had a setback.

Christine Schanen says, “Unfortunately, the most recent allergy testing showed, that of those seven foods, at least three, and possibly four, he had developed new allergies, if you want to call it, new sensitivities to those foods.”

So, for right now, Giles can eat milk, wheat, beef and pork. His parents are also trying out broccoli, cauliflower and cooked pears since those three foods didn’t cause an allergic reaction during the latest testing.

To keep those three new foods, he will go through his seventh endoscopy in April to make sure his esophagus isn’t inflamed or closing up.

Having to go through so many medical tests is tough on Giles, and it’s very difficult for his parents.

“It’s so stressful to watch your child suffer and not have any clue about what’s wrong. So, I hope that somebody watching this might see this and hopefully maybe find an answer about what’s bothering their child,” said Christine Schanen.

There is no known cure for EE, and right now there is no FDA approved treatment for this obscure disease that affects 50 people out of every 100,000.

Markowitz added, “There’s much less incentive for any drug company to develop a treatment for it because compared to other diseases that affect more people, it’s much more likely that those drugs are going to be used.”

Through all the pain, the allergy testing and endoscopies, Giles continues to focus on the positive things in his life. For example, he just built a 2,000-piece Lego tower, and he’s a big fan now of NASCAR Nationwide series driver Jeremy Clements of Spartanburg since he’s racing to raise awareness about the disease.

Giles told us all about Clements’ race car.

“It looks like an EE cure car, but it’s a race car. ‘Is it a certain color?’ It’s a certain color, green. ‘How fast does it go?’ Well, zoom!” he said.

Feb. 29 is actually Rare Disease Day around the world. The goal is to focus attention on improving research, diagnosis and available treatments.

If you’d like to learn more about eating disorders like EE, you’ll find links in the As Seen On section of foxcarolina.com.

– Trent Butler (source: Fox Carolina)