Eosinophilic esophagitis a difficult battle for Clearfield teen

Dec 5 2010 - 11:38pm

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(ERIN HOOLEY/Standard-Examiner) Rian Kirkham, 12, sits on the couch at his home in Clearfield.
(ERIN HOOLEY/Standard-Examiner) Rian Kirkham, 12, sits on the couch at his home in Clearfield.

CLEARFIELD -- Rian Kirkham, a seventh-grader at North Davis Junior High School, said he got his Christmas present early this year.

It was a proper diagnosis that came in August, of what's been keeping him from school for the past three years.

His diagnosis is eosinophilic esophagitis, also referred to as E-E. It's a condition in which a type of white blood cell is found in above-normal levels and attacks the throat.

Symptoms vary among those with the disorder. Often those with the disease are misdiagnosed as having gastroesophageal reflux disease, also known as GERD.

"Just to get a diagnosis for Rian has been a blessing," said Rian's mother, Tina Kirkham.

But knowing what he has still doesn't give him and his family all the answers.

That's because this rare disease, diagnosed in only one child in 10,000, doesn't have any known cure.

Tina Kirkham said the disorder just started getting diagnosed in 1990, and it affects young men.

All the doctors know how to treat right now are the symptoms, according to a number of sources, including the American Partnership for Eosinophilic Disorders website.

And the worst symptom is having episodes of not being able to breathe and choking on food.

"Sleep is hard," said the mother. "Sleep is a big offender. Episodes hit worse at night. He gets really anxious. We usually end up sleeping in the same room."

Rian also has stomach problems, headaches and depression brought on by the isolation he feels because of not being able to go places very often.

"I have throat problems all the time," Rian said. And leaving the house is scary because no one knows what will trigger Rian's choking episodes.

"We try our hardest to live a normal life," she said. "You just don't know what's going to offend him."

The long battle with the disease started suddenly one day and continually got worse as the family searched for answers.

"He came downstairs, and he was choking on a peanut butter and jelly sandwich," said Tina Kirkham. "My first thought was he had acid reflux."

But since August, Tina Kirkham said her son has been doing better. Their goal is to get him back into school. The family has learned to keep him away from such foods as cow's milk, soy, egg and wheat.

They also have learned not to allow Rian to eat any protein whatsoever.

Rian takes an extensive collection of medications each day to address both his symptoms and their side effects. He also sometimes limits his diet to a medical formula while his throat heals.

"He gets very, very stressed," said his mother of the many issues surrounding the disease.

Douglas Jones is the doctor who was finally able to treat Rian.

Jones is a board certified specialist who treats allergy, asthma and immunologic disorders. He works out of the Rocky Mountain Allergy, Asthma and Immunology Center in Layton.

Rian had been to numerous doctors before he met Jones. He was diagnosed with acid reflux and psychological disorders, such as depression and anxiety. Other doctors said they didn't know what was wrong.

He's been tested by scads of physicians in a variety of different specialties.

But finally, when visiting an ear, nose and throat specialist at Primary Children's Medical Center, Tina Kirkham said she showed him a small newspaper article she'd found on the disorder and asked that he be tested.

The result came back positive.

Jones said one reason the disorder is frequently misdiagnosed is that not a lot of physicians are familiar with it.

Jones has experience with the disease because he trained at Creighton University in Omaha, Neb., where there is an E-E clinic. He's hoping, like the Kirkhams, to get the word out.

"Just being aware that the disorder exists will help," Jones said. "If people have difficulty swallowing, abdominal pain and a history of allergy, they may want to have things looked at."

Jones said part of the problem with getting a proper diagnosis is that the disorder is misunderstood.

"There are environmental and genetic factors that can predispose people," he said. "In general, an association with allergies is common. It's not a guarantee."

Jones said understanding is key, because the disorder does not go away on its own.

"(Patients) will bounce around from doctor to doctor, not getting a specific diagnosis, and it gets worse," he said. "It's a disease that does not let up."

Misunderstandings also are what worries Rian about his disorder.

"He's not contagious," said his mother. "He worries that people think he has something that people can catch from him."

"I did have a lot of friends in fifth grade," Rian said. "I only have a few now."

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