A Park City family wrote a book chronicling their struggle to get an accurate diagnosis for their son Kevin's severe abdominal pain. Kevin was misdiagnosed with anorexia for years and given inappropriate medication, when he actually had a rare condition called Wilkes Syndrome that blocked his intestines. After many specialists failed to properly diagnose him, surgery revealed the actual problem. The book documents Kevin and his mother's journey in the hopes that it helps others facing complex medical issues navigate the healthcare system and have their voices heard.

1. New book chronicles family's medical plight
Mom and son hope story helps people navigate medical process
Scott Iwasaki, The Park Record
Posted: 09/30/2011 03:06:58 PM MDT
Park City High School senior Kevin Whiting has felt pain in his lower abdomen all his life.
He felt it each time his body hit a growth spurt, and by the time he was 13 and a student at Treasure
Mountain Middle School, the pain was so severe, he couldn't eat, let alone function as a normal
teenager.
His parents Vicki and Jeff took him to doctors and specialists but were told the same thing.
Kevin was anorexic.
The problem was, he wasn't. Kevin had been misdiagnosed and was actually suffering from Wilkes
Syndrome, an ailment where the Superior Mesenteric Artery cut off his small intestines so food
couldn't pass through.
The symptoms were severe weight loss and pain, said his mother Vicki Whiting during a joint
interview she and Kevin had with The Park Record.
"Kevin was treated with anti-anxiety medication and anti depressants to cure his anorexia," Vicki
Whiting said. "That was when Kevin became suicidal because he was taking medicines he shouldn't
have been on."
Unfortunately, once her son was labeled as anorexic, it became the de facto diagnosis.
"It precluded Kevin from getting the diagnostics he should have received, and to get the medical system
to move past the short-hand explanation was one of the hardest things we had to go through," she said.
After going to four or five specialists, the Whitings went to a family friend who was a colorectal
surgeon.
"He knew me well enough to run the diagnostics that needed to be done, and the remedy was surgery,"
Iwasaki, Scott. "New Book Chronicles Family's Medical Plight." The Park Record. The Park
Record, 30 Sept. 2011. Web. 22 Mar. 2013.

2. Kevin said.
The Whitings' plight is documented in a new book called "In Pain We Trust: A Conversation Between
Mother and Son on the Journey from Sickness to Health." The book will be released on Oct. 10.
The idea for the book came after Kevin's duodenojejunostomy, which is an operation that forms a
passage between the beginning and middle of the small intestine.
"The last time the surgery had been done at Primary Children's Hospital was 10 years ago but at that
point, Kevin was taller than five feet and weighed only 65 pounds," Vicki said.
After the surgery, Kevin still was being nourished through a pick line that ran through his veins, said
Vicki Whiting.
"We spent a lot of time in the car going from doctor appointments to school," she said. "Usually his
spirits were high, but one particular day, they weren't and he said, maybe there was some way we could
make it so someone didn't have to go through what he did."
The idea stuck with Vicki, who is a professor at Westminster College, and she decided to write a book.
"Since I do write as part of my occupation and my articles are meant to inform and share ideas, it was
the only thing I had to share from my skill set," she said.
The book was different than writing about mentorships, global leaderships and social entrepreneurship
articles she was used to writing, but in some ways easier.
"Kevin and I both felt we had an important story to share," she said. "We felt it could make a difference
for other kids who may be suffering through chronic, complex illnesses, or who were having trouble
having their voices heard as they worked through the medical system."
At other times, it was more difficult.
"Going back through and reliving the painful story and realizing at many junctures, the outcome could
have been much different, was hard for us," Vicki said. "My husband Jeff would come home and know
we had been writing because of the heaviness in the air."
Kevin had a difficult time writing because it brought back scary events that he had tried to block out of
his mind.
Iwasaki, Scott. "New Book Chronicles Family's Medical Plight." The Park Record. The Park
Record, 30 Sept. 2011. Web. 22 Mar. 2013.

3. "It did help therapeutically, though," he said. "It also put forward memories that I didn't recall, because
sometimes when something happened I was trying to distract myself form the pain or I was so drugged
up that I didn't remember."
However, the writing sessions were important to both, so they continued.
"Because the book is chronological, I would write my section and tell Kevin what I was writing about
and ask him about his takes on the events," Vicki said. "He would give me his story or essay and I
would transcribe it or edit it. To have Kevin's voice in the book is brilliant and I think is a contribution
that I haven't found anywhere else."
Another challenge was knowing when not to open the door too wide on the family's privacy.
"I tend to live my life pretty open, so it wasn't hard for me to write my part, but the tricky part of it all
is the fact that it's the story of our family," Vicki said. "My husband tends to be the one who makes it
through a problem and march forward, and still it's hard for him to see the pictures. My oldest son,
Philip is a private person, and then we have our youngest daughter Katie, so we had to make sure we
weren't bringing in aspects of our private life that others would feel uncomfortable having out in the
public."
Book publishers had different ideas of how to distribute the book.
"McGraw-Hill publishers saw it playing a role in nursing school as a comprehensive case to go along
with a nursing fundamentals text," Vicki said. "So we ultimately left it up to Kevin to choose."
"I thought the book meant more as a story than as a text," he said. "As a text, no one would attach to
the characters as much."
So the family chose to publish through Blooming Twig Books, which will release it as a story.
Having the book published helped Vicki deal with some of the uncertainties she faced during the crisis.
"I realize now that I did make the best choices I could have at the time," she said. "Even if people don't
buy the book, it's documented so people like Kevin's kids and his grandkids can know who he is."
Kevin still hopes the book will help parents, doctors and children listen to each other.
"I'd like it to helps a doctor be more compassionate with a patient or help with a parent navigate the
Iwasaki, Scott. "New Book Chronicles Family's Medical Plight." The Park Record. The Park
Record, 30 Sept. 2011. Web. 22 Mar. 2013.

4. medical system or have a kid deal with their own pains," he said.
"In Pain We Trust" will be available Oct. 10 at www.amazon.com and by
visiting www.vickiwhiting.com.
Iwasaki, Scott. "New Book Chronicles Family's Medical Plight." The Park Record. The Park
Record, 30 Sept. 2011. Web. 22 Mar. 2013.