Posts Tagged ‘
Kawasaki disease ’
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.
Image via Shutterstock
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Thursday, January 24th, 2013
Check out blog posts by Rosie Pope, star of Bravo’s “Pregnant in Heels,” every week at Parents.com!
It all started with my Wellington, my middle child, having a simple fever, a rash, and the thing we all so often hear from our pediatricians: “How long has your child had a fever? If it’s been for five days or more, we will run some more tests.”
I have to admit I had no idea why this magic number of five days was so important, having never had any of my children ever run a fever for that long. The concern would come and go as quickly as the fever passed.
Well, not this time. Multiple doctor visits, two trips to the ER (one of which we left with a misdiagnosis of an allergic reaction to penicillin), an ambulance to a pediatric hospital, a lot of tests, some miracle medicine, an ecocardiogram, and several infectious-disease doctors and cardiologists later, it seems as though everything is going to be okay.
My son was diagnosed with Kawasaki disease. It’s a disease of unknown cause that attacks the blood vessels and ultimately the heart if it is not treated within a critical window of time. My husband and I held our son in my arms while he received the medicine he needed, and we watched our little boy go from so sick and in pain to our smiley, cuddly laughing little boy once again. We will forever be thankful for the scientists who had done the work to learn how to cure this rare disease.
We are still recovering from the experience, and have a future of follow-ups ahead of us. But in looking at our experience, at what went right and what went wrong, I learned something so important: You know your child best. You must advocate for him (or her) if you believe him to be sick, and you must not give up until you get to the right doctor, to the proper care, and have the answers to your questions.
Wellington is going to be okay because of our perseverance and because of the access we had to the right doctors. Only in my nightmares do I think what could have happened if we hadn’t persisted and hadn’t listened to our gut that this was more than a common virus, this was not an allergic reaction, that something was very, very wrong.
Wells is back to his old ways, he’s eating like a champ, flirting with the ladies, and has a quest for adventure and learning that only a toddler could. I am thankful every day, and I know now to always listen to my gut.
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Wednesday, July 13th, 2011
When Deborah Copaken Kogan snapped a photo of her 4-year-old son, Leo, in the pediatrician’s office on Mother’s Day and uploaded it to Facebook, she was looking for a few laughs (and probably some sympathy). The photo’s caption was, “Nothing says Happy Mother’s Day quite like a Sunday morning at the pediatrician’s.”
According to Slate.com, Kogan brought Leo to the doctor because he had a rash and a fever, and she feared strep. Leo was sent home with antibiotics, but the next day he was sicker and Kogan was back at the doctor. His new diagnosis was scarlet fever. Kogan continued posting pictures of Leo on Facebook to share with friends.
On the third day, Leo woke up so swollen and puffy that he was almost unrecognizable. Kogan sent pictures of her son to the doctor and posted one on Facebook. Before she heard from the doctor, Kogan got a call from Stephanie, a former neighbor and actress. Stephanie urged Kogan to bring Leo to the hospital; her own son had similar symptoms a few years earlier and was diagnosed with Kawasaki disease, a rare and sometimes fatal auto-immune disorder.
After receiving more comments and messages on Facebook from friends with the same suspicions, including a pediatrician and a pediatric cardiologist, Kogan brought Leo to the hospital. They were right: Leo had Kawasaki disease.
He will need tests on his heart every year for the rest of his life, but he is recovering and doing well.
Kogan, who originally joined Facebook to monitor the cyber-bullying of her oldest child, is grateful for how being part of a larger network of friends helped “diagnose” her son in a timely matter and also offered support during a difficult time. She recently wrote, “Thanks to my Facebook friends and their continuing support, I do not feel so alone.”
Do you have your own story about Kawasaki disease? Share your experience here.
Photograph by Deborah Copaken Kogan. Originally featured on Slate.
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