Sarah Chalke, actressA story every mother needs to see, inspired by real-life events. This promotion for an episode of “Grey’s Anatomy” may sound dramatic, but when your child is ill and a diagnosis doesn’t happen promptly, the situation is not without drama.

Sarah Chalke, a television star who appeared on “Roseanne” and “Scrubs,” is a guest star on tonight’s “Grey’s Anatomy,” with a storyline that mirrors what happened to her family.

Two years ago, Chalke’s son, Charlie, came down with Kawasaki disease, a rare condition with potentially serious effects. She has spoken publicly about the difficulty of getting Charlie diagnosed and the urgency of getting the appropriate treatment. There is a narrow window—a mere 10 days after the initial symptoms appear—for the intravenous treatment to be effective.

Michael Portman, MD, of Seattle Children’s Research Institute, treats children with Kawasaki disease and also conducts research into the causes of the condition. His team at Seattle Children’s sees about 40 children each year with the condition, and they follow about 500 to 600 patients with Kawasaki disease.

Portman spoke with On the Pulse and answered a few questions related to the “Grey’s Anatomy” segment, his work and what parents should know about Kawasaki disease.

What is Kawasaki disease?

Portman: Kawasaki disease is a rare condition that can affect many parts of a child’s body, including the mucous membranes, skin, eyes and lymph nodes. Kawasaki disease can also cause problems with the heart, including inflammation of a child’s blood vessels, specifically the coronary arteries.

What are the symptoms of Kawasaki disease?

Portman: Children with Kawasaki disease typically have a fever for at least five days, a red and patchy skin rash on the trunk and in the groin area, swelling and redness in the hands and feet (with peeling skin later on), and bloodshot eyes. Children may also have swollen lymph nodes in the neck and red and swollen cracked lips, mouth, throat and tongue.

Most patients with Kawasaki disease are younger than six; the condition can occur in children of all ages and even in young adults.

What causes Kawasaki disease?

Portman: There are lots of theories about what causes Kawasaki disease. Researchers have thought that it might be linked to genetics or even the wind, of all things. Patients tend to be diagnosed with the condition more frequently from winter through spring, which suggests a possible environmental trigger.

How many children in the U.S. have Kawasaki disease?

Portman: Doctors diagnose Kawasaki disease in 4,000 children in the U.S. every year, and the condition is more common in boys and Asian children. Kawasaki disease is very common in Japan, with up to 20,000 children diagnosed each year.

How is Kawasaki disease diagnosed?

Portman: This can be tricky for doctors who aren’t familiar with Kawasaki disease, as we’ll see on “Grey’s Anatomy.” There is no test for the condition. A doctor will provide the diagnosis after examining a child, checking his or her temperature and ruling out other illnesses.

What treatments are available for Kawasaki disease?

Portman: Intravenous gamma globulin (IVIG) is the main treatment for Kawasaki disease. This medicine is given through a vein, or by IV. It is effective if given within the first 10 days after the onset of symptoms. About 20 percent of children do not respond to the first dose and need a second dose.

What is the latest research on Kawasaki disease?

Portman: I’m conducting work on a new theory, that the soy you eat could perhaps be an important factor in Kawasaki disease. My study, “Kawasaki disease and soy: Potential role for isoflavone interaction with FcGamma receptors,” was published online late last year in Pediatric Research, a Nature journal.

I am also conducting research on adding a medication to the intravenous treatment to prevent long- term inflammation that increases the risk for heart damage.

What should parents know about Kawasaki disease?

Portman: Be familiar with the symptoms and visit sites like Seattle Children’s and the Kawasaki Disease Foundation to learn more. And trust your gut as a parent. The title of the Grey’s segment tonight, “Can’t fight this feeling,” translates over into any medical condition, really.

If you sense that something is wrong with your child, talk with your doctor and healthcare team and make sure that you’re all on the same page. As Ms. Chalke learned, advocating for your child in the medical arena is extremely important.

Resources:

• Does soy hamper kids’ immunity: A look at the latest research from Seattle Children’s Dr. Michael Portman.
• Podcast from Pediatric Research on Portman study
• Kawasaki Disease Foundation

Portman’s team is making dramatic advancements toward improving the lives of children with Kawasaki disease. They recently established a guild to raise financial support for this research. To learn more about supporting the guild, or to make a donation, please contact kawasakidisease@seattlechildrens.org.

Learn more about research and treatments at the Heart Center at Seattle Children’s. U.S. News & World Report in 2012 named the Heart Center as one of the top medical and surgical heart teams in the country.