Tuesday, September 24th, 2013
Sarah Chalke had a gut feeling something was seriously wrong with her son Charlie. The 2-year-old was covered in red rashes and had a fever for days. At night he was restless, arching his back and crying. Chalke went from doctor to doctor, one wrong diagnosis after another. But it was only when she took matters into her own hands by researching her son’s symptoms and consulting a specialist that she found an answer: Kawasaki disease.
The little-known childhood inflammatory disease was the cause of Charlie’s redness on his body and his lips, which turned so bright he looked like he was wearing lipstick. His blood vessels were inflamed and his joints ached. By the time Chalke carried Charlie’s limp body to the emergency room, it was obvious that he was in danger.
“I’d never seen a baby that sick,” Chalke says. And she hopes it’s something no parent will ever have to experience.
Now the actress is at the helm of a Crowdrise fundraiser for a diagnostic test prototype for Kawasaki disease. Doctors at Stanford University and University of California San Diego are getting closer to developing a test that could be 95% accurate. But first, it requires the time and funding to refine it for mainstream use.
“It would be a really big deal if this diagnostic test was in doctors’ hands,” Chalke says. “It would mean that kids would not go misdiagnosed. It would take a lot of the guessing out of Kawasaki disease. It would have meant our son would be treated a lot sooner.”
Diagnosing the disease is tricky because it presents a collection of symptoms, Chalke explains, which often leads many doctors to believe that the sick child has a completely different ailment than Kawasaki disease. The guessing creates a lot of confusion and wasted time.
“The waiting time is excruciating from when you get the diagnosis to when you get the treatment, and then when you find out if the heart is OK,” Chalke says.
What’s worse is that the disease is like a “ticking clock,” as Chalke describes, and treatment must occur within a small window of about only 10 days. And as the leading cause of acquired heart disease in children, Kawasaki disease makes the urgency of an accurate diagnosis all the more important.
Fortunately, Charlie was diagnosed close enough to the crucial period of time that he got the help he needed, and is doing well today. Now 3 and a half years old, he is healthy and happy, says Chalke, and makes her laugh all the time. He also hasn’t suffered coronary aneurysms or heart attacks, like some children with Kawasaki disease do.
“I don’t really think there’s a day that it doesn’t strike me we’re so lucky he’s OK,” Chalke says.
Because of Chalke’s research and unyielding search for a proper diagnosis, Charlie survived. If you suspect your child has Kawasaki disease, Chalke says to be vigilant about getting a diagnosis. She was grateful for the Kawasaki Disease Foundation’s website, which confirmed her instincts that Charlie had the disease, and she let Charlie’s doctor know her concerns.
“If a parent is worried that their kid is really sick the first step is to bring it up to your doctor,” Chalke says. She also encourages taking pictures of your child to show to the doctor and writing all symptoms down. And if the first doctor isn’t receptive, try again, and seek out an infectious disease specialist if necessary.
“I have huge respect for doctors,” Chalke says. “We’ve had some incredible care for Charlie, but I really do feel like you do need to advocate for yourself and for your kids.”
With her campaign for a Kawasaki disease diagnostic test, Chalke is speaking out for all parents who are looking for much-needed answers.
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