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Book co-authored by mother and son brings awareness to rare disease

By Carole Mikita | Posted - Dec. 7, 2011 at 11:59 p.m.

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PARK CITY — Taking on the health care system is not what a Park City mother and son ever imagined. But that's what happened when, as a young teenager, Kevin Whiting experienced severe pain that was a medical mystery.

Doctor visit after doctor visit, the mystery illness was constantly misdiagnosed. The wrong medication pushed Kevin to wanting to end his life, and the entire family to the edge. What they learned led to the book titled "In Pain We Trust."

I'm a researcher by training, and it took every bit of my research training to keep Kevin alive.

–Vicki Whiting

"I'm a researcher by training, and it took every bit of my research training to keep Kevin alive," said Vicki Whiting, co-author of "In Pain We Trust."

In March 2007, Kevin Whiting accompanied his mother, Vicki, a Westminster College professor, to California for her interview famed Coach John Wooden. That's when his intestinal pain began.

"On the plane ride home from that, it just became excruciating," Kevin said. "I was screaming in the back of the plane. I felt horrible for the other passengers."

Many doctor visits and hospital stays followed. Only the act of shredding phone books distracted him from the pain. Morphine did not help.

"Unbeknownst to us, a doctor had used shorthand to describe his appearance as anorexic. However, because it was in his medical charts, it was interpreted in each subsequent visit to be anorexia nervosa," Vicki said.

That, they say, labeled Kevin and prevented a correct diagnosis for a year and half.

While all this was going on, Kevin was over 5 feet tall and weighed only 63 pounds — the pain prevented him from eating much. One doctor prescribed an antidepressant, and Kevin became suicidal.

What is ... Wilkie's syndrome?
Wilkie's syndrome, known primarily as Superior Mesenteric Artery (SMA) syndrome, is a digestive system disorder which occurs when the superior mesenteric artery obstructs the duodenum (first portion of the small intestine) as it crosses over it.

-Source: National Institutes of Health

"I remember sitting on the bed and just asking him if he couldn't live for himself, maybe he could live for us?" Vicki said.

The family traveled to Australia and found patient-centered health care. Naps with kangaroos brought back Kevin's will to live.

They returned with hope. One of his father's colleagues then discovered Wilkie's syndrome, a blockage in the intestines, and surgery followed.

His health has improved, and he has put on a little weight, but he still has to watch what he eats and sees doctors on a regular basis for follow-ups.

Kevin is now a Park City High School senior and he volunteers at the new hospital there.

"I've decided I want to become a surgeon when I get older, so I want to go through med school and try and make a difference in the health care system," he said.

They share their story to create awareness. "We're able to maybe make some good come out of a truly heartbreaking and horrific chapter in our lives," Vicki said.

The Whitings say they've heard from three sets of parents who credit this book with saving their children's lives.

Westminster's School of Nursing is already using the book, and Intermountain Healthcare and Hospital Corporation of America have sponsored discussions about patient-centered care because of it.


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Carole Mikita


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