It may be the nightmare all parents fear: watching a child deal with an illness doctors cannot seem to diagnose, let alone treat.
For one Bonney Lake couple and their 11-year-old son, the illness is Kawasaki disease. Bill and Jennifer Bevaart had never heard of it, and it turned out many physicians didn’t know much more.
“I met an emergency room physician who sees children all the time, and he was not aware of the disease,” said Dr. Michael Portman. “It can be hard to diagnose because it can mirror many childhood diseases.”
Portman directs the Kawasaki disease center at Children’s Hospital in Seattle, which treats an average of 50 Northwest patients a year.
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Last year, one of them was William Bevaart.
The oldest of four children, William began his journey through the medical system one day last September when he was 10.
“William is energetic, active in Tae Kwon Do, and he came home from school and fell asleep. That wasn’t like him,” his mother Jennifer said. “He had a 103-degree temperature. His regular doctor was unavailable, so we we were referred to another doctor.
“They diagnosed William with a sinus infection, gave him some antibiotics and sent him home.”
The next day, the fever remained high. Jennifer took him to an urgent-care clinic, where he was diagnosed with walking pneumonia, given a different antibiotic and sent home.
The following morning, he had a rash. The fever remained over 100 degrees. He was sleeping 12 hours a night.
“I thought he was worn out from school, maybe had a virus. I didn’t think anything of it,” said his father, Bill.
Jennifer couldn’t shake a nagging fear.
“I just knew something wasn’t right; call it mother’s intuition,” Jennifer said. “I took him to St. Elizabeth’s emergency room in Enumclaw.”
There, doctors took a chest X-ray, examined William and advised Jennifer to let the medication run its course.
She waited two days.
“The whites of William’s eyes turned red, the fever was still there. I finally reached his regular doctor, Sarah Dicugno, and she checked him out thoroughly.”
Dicugno, a nurse practitioner, took throat and nose cultures, then a blood test. She sent William home, told Jennifer to keep him on the antibiotics and promised to call with the test results.
“She called that night and said, ‘OK, are you sitting down?’” Jennifer recalled.
Dicugno said she’d been researching all afternoon.
“She feared it was Kawasaki disease or scarlet fever,” Jennifer said. “Sarah told me in 17 years of practice, she’d only had one case of Kawasaki disease, but she told me to leave right then and take William to Mary Bridge Children's Hospital.”
Jennifer called her husband, a sewer maintenance worker who was on a job in Bellingham.
“She said ‘Kawasaki disease’, and I’d never heard of it, so I looked it up online,” Bill said. “As soon as I saw it affected a child’s heart, I slammed the computer shut and took off.”
By 1 a.m., William was at Mary Bridge in Tacoma receiving intravenous gamma immunoglobulins, used to boost the immune system. An echocardiogram found an aneurysm near his heart.
A cardiologist told the family that William was rejecting the treatments, and an expert in San Diego was called. William was started on a large dose of Remicade, a drug used most often against arthritis.
Ten days later, the fever remained and William was sent to Seattle Children’s Hospital — and Dr. Portman.
The good news was that a team of doctors was put on the case — specialists in cardiology, pediatrics, rheumatology and infectious diseases.
The bad news was that William now had two aneurysms near his heart, and later would develop a third.
“It was scary,” William recalled this week. “I was afraid I was going to have a heart attack.”
He had reason. The literature available through Children’s Hospital says Kawasaki disease —named for Tomisaku Kawasaki, the Japanese pediatrician who first described in it 1967 — can cause life-long aneurysms and is the most common cause of permanent heart disease in children.
Portman and his team began treating William with Prednisone, a steroid used to ease inflammation. In all, there were four hospitalizations.
Last week, William returned to 5th grade at Bonney Lake Elementary School. His mother fears he suffers from post-traumatic stress disorder. If so, he hides it well.
“William’s smile and courage make him an inspiration,” school Principal Sandy Miller said.
William goes to Seattle every two weeks for checkups. Two of the aneurysms have been reduced, but he’s been told to avoid strenuous activities, including Tae Kwon Do.
“I’m getting better, but I’d like to help my mother spread the word on Kawasaki disease,” William said. “I’d like to be a cardiologist, help kids who are in my situation. It’s a scary thing to go through for a kid.”
Jennifer refuses to be angry.
“We had misdiagnoses three, four times, but it wasn’t incompetence,” Jennifer said. “The information just isn’t out there. It’s on the shoulders of parents to spread the word.”