A strange-sounding illness leads to speculations and misinformation

The tragic loss of Mr. and Mrs. John Travolta’s son, Jett, has led to endless media speculations. All that is actually known for now is that one of the two nannies caring for him at the family’s vacation home on Grand Bahama, found him unconscious in the bathroom Friday morning and he was pronounced dead at a Freeport hospital. That hasn’t stopped rumors and theories.

This tragedy has also spread myths and misinformation, and raised concerns among parents, about Kawasaki disease, one of the conditions being cited as a possible contributing factor.

Writer Harriett Brown, whose daughter developed Kawasaki disease when she was eight years old, has written a post for other parents to help clear up some of the fears and misinformation on this illness. As she wrote:

Kawasaki disease is a full-body vasculitis, meaning that blood vessels all over the body become inflamed. That's why the whites of the eyes turn red, along with the soles of the feet and palms of the hands and the tongue. The heart, of course, is vascular, and it, too, becomes inflamed and can suffer permanent damage. KD affects mainly babies and toddlers of Japanese descent, and is often not diagnosed quickly. Children can indeed wind up with scarred and damaged hearts.

Despite one popular myth said to have been believed by Travola, it is not an environmental illness caused by exposure to carpet cleaners or other chemicals or toxins. Harriett didn’t buy this pop theory when Lulu had Kawasaki illness, either, not just because they’d never cleaned their carpet before she got sick. As Harriett pointed out, this belief probably originated because of a correlation. “KD is statistically more common in the winter and early spring,” she wrote, and perhaps people clean their carpet more in the winter. But leading researchers she’d interviewed for a New York Times article also do not believe it has anything to do with carpet cleaners. It’s more likely from an infection, she said.

She also addressed another popular fear circulating the media, emphasizing:

There is absolutely no evidence that KD causes autism. Repeat: KD does not, to the best of our knowledge, cause autism… we do know that kids who have had KD do not typically wind up with seizure disorders or autism.

According to the National Institute of Health and American Heart Association, Kawasaki disease is typically a self-limiting illness affecting about 4,000 children each year in the United States, about 80% are under age five and more than half are boys. It’s most common among those of Asian and Pacific Island descent. It isn’t believed to be contagious, but due to an infection, although no single microorganism has been shown to cause most cases. An autoimmune component is also theorized.

A child with Kawasaki disease typically gets a high fever that lasts at least 5 days or longer and doesn’t go away with acetaminophen or ibuprofen or antibiotics. It also can cause bloodshot eyes; red chapped lips; redness in the mouth; strawberry tongue or a white coated tongue; red swollen hands and feet; skin rash; peeling skin; swollen lymph nodes and joint pain that can make it hurt for kids to stand or walk.

While there is no known way to prevent it, parents should call their pediatrician if their child develops these symptoms because when treated promptly, nearly all children will fully recover. Just like Lulu, it’s treated with aspirin and high doses of intravenous gamma globulin to reduce the chances of developing coronary artery damage and to prevent blood clots from forming.

It is the main cause for acquired heart disease in children and can affect the heart in 15 to 25% of untreated kids. But this risk is reduced to 5-10% when they’re given IV gamma globulin, according to Dr. Elizabeth Kline Satter, M.D., MPH, a dermatopathologist at the Naval Medical Center in San Diego. The general vasculitis can involve arteries anywhere in the body, but the most serious complication is inflammation of the coronary arteries of the heart. This can weaken the wall of the coronary artery and lead to an aneurysm and cause a later heart attack. Kawasaki disease can cause other heart problems but usually they go away in 5 to 6 weeks with no lasting damage. Children who’ve had Kawasaki disease are followed every 1 to 2 years with an echocardiogram to watch for heart problems.

More information is available from the Kawasaki Disease Foundation. As with many conditions where medicine may not yet have all the answers, it makes a ripe area for speculations about a cause and quack remedies that prey on parents’ fears.

Before making conjectures or scare ourselves based on media stories or anecdotes, it’s always valuable to stop and get the soundest information and focus on what is known to help kids.