Kawasaki Disease Clinic

The most serious problems from Kawasaki disease are the effects it may have on the heart and its arteries , including:

• Inflammation of the blood vessels (vasculitis), especially the coronary arteries. These arteries supply the heart with blood. Inflammation can lead to wide spots in the arteries called aneurysms. Scar tissue can form at these spots, narrowing the arteries, blocking blood flow and causing lasting heart damage. Also, clots can form in the arteries and block blood flow.
• Swelling of the heart muscle (myocarditis) or the sac around the heart (pericarditis).

Kawasaki disease is the most common cause of acquired heart disease in children. According to the American Heart Association, 1 in 5 children with Kawasaki disease has problems with their heart because of the disease.

Any child may get Kawasaki disease. It’s more common in boys and in children from an Asian background. Most people diagnosed with this condition are younger than age 5. But it can happen to children of all ages and even in young adults.

It is not clear what causes Kawasaki disease. Doctors believe it might happen because an infection triggers the body’s own immune system to attack itself.

Kawasaki disease is not contagious. It does not pass from person to person.

In the United States, about 1 in every 5,000 children gets Kawasaki disease. In Japan and other Asian countries, the illness is about 10 times more common, affecting more than 10 in every 5,000 children.

• Seattle Children’s team of more than 40 pediatric cardiologists has extensive experience with Kawasaki disease. Each year, we see about 40 to 50 new children with this condition and provide ongoing care to another 600 to 800 children.
• Because we see so many children with Kawasaki disease, we have a special Kawasaki Disease Clinic within the Heart Center. The clinic is staffed by cardiologists who have special expertise. They are dedicated to diagnosing and treating this condition.
• Dr. Michael Portman is on the American College of Cardiology’s committee for Kawasaki disease. He takes part in creating the national guidelines for safe and effective care.
• Timely diagnosis and treatment are essential to prevent the most serious effects of Kawasaki disease. For this reason, our specialists make it a top priority to see children who have symptoms.
• Our pharmacists are experienced in safely giving the special medicines used to treat this condition.
• For children who need this, experts in our state-of-the-art cardiac catheterization labs provide treatment to open narrowed arteries.
• An illness called MIS-C shares some features with Kawasaki disease. It affects a small number of children who have had the virus that causes COVID-19 or have been around someone with COVID-19. The team from our Kawasaki Disease Clinic treats children with this illness, who need complex care. MIS-C stands for multisystem inflammatory syndrome in children.

“There are things we have to be a little more cautious about, but otherwise she’s pretty much just a normal kid. Between Dr. Portman and Dr. Olson and all the nurses, it was nothing short of a miracle. We can’t thank Dr. Portman enough for all the assistance throughout the years, as well as Dr. Olson and Seattle Children’s. It’s the best place to be if you have a sick child.”

– Trevor Nelson, whose daughter Olivia received care at Seattle Children’s to prevent complications from damage to her heart

• Our surgical outcomes are among the best in the nation year after year.

• We care for children with Kawasaki disease or with ongoing health needs related to the condition who are just a few months old up through 21 years of age.
• Your child’s treatment plan is custom-made. Doctors in the Kawasaki Disease Clinic will review your child’s symptoms, health history and test results to create a plan of care just for your child. We will answer all your questions about how this disease affects your child.
• Over time, we closely check your child’s needs to make sure they get the care that’s right for them at every age. This includes preparing them to transition to adult care when they are ready, if they have any lasting effects.

• We are committed to your child’s overall health and well-being and to helping your child live a full and active life.
• Whatever types of care your child needs, we will help your family through this experience. We will discuss your child’s condition and treatment options in ways you understand and involve you in every decision.
• Our child life specialists know how to help children understand their illnesses and treatments in ways that make sense for their age.
• Seattle Children’s has many resources, from financial to spiritual, to support your child and your family and make the journey as smooth as possible.
• Many children and families travel to Seattle Children’s for care. We help you coordinate travel and housing so you can stay focused on your child.
• Read more about the supportive care we offer.

• Seattle Children’s takes part in nationwide research networks that are funded by the National Institutes of Health. This allows us to learn more about Kawasaki disease and MIS-C and to develop better treatments.
• The doctors who take care of your child in our Kawasaki Disease Clinic are leaders in research into the causes of the disease, ways to diagnose it earlier and providing more effective care. They are striving to improve the quality of life for children affected by this illness.
• Dr. Michael Portman leads a group of Seattle Children’s researchers working to end heart damage caused by Kawasaki disease. Read about our Kawasaki disease research program.

• Intravenous immunoglobulin

Intravenous immunoglobulin (IVIG), a medicine given into a vein, also called an IV, is the main treatment. It works if given within the first 10 days of the disease. About 1 in 5 children does not respond to the first dose and needs a second dose. To get this medicine, your child will need to stay in the hospital.

Your child will need aspirin to help control symptoms like fever, rash and swollen joints. At first, they will likely need high doses. Then, after their temperature is normal, the doctor will lower the dose. Your child will go home and stay on the lower dose for several weeks to help prevent blood clots.

Families sometimes wonder about the risk for Reye syndrome. No one has found a link between Reye syndrome and aspirin when used in the treatment of Kawasaki disease. Aspirin was linked with Reye syndrome in the 1970s and 1980s when it was used in extremely high doses to treat a viral illness, like the flu and chickenpox.

• Care for heart concerns

If your child has coronary artery problems from Kawasaki disease, they may need other types of care to help prevent further health problems, such as medicines that prevent blood clots.

Your child may need exercise testing to find out whether it is safe for them to exercise and, if so, how much.

Some children need cardiac catheterization to treat the narrowing of their arteries.

Rarely, children with the most serious heart damage may need a heart transplant.

• Follow-up care

All children who have had Kawasaki disease need regular check-ups to see if any new problems develop. Some may need ongoing care for long-term issues.

If there were a blood test to find Kawasaki disease, it would be easier for doctors to diagnose and treat the illness earlier. This would lower the risk for serious heart problems. Seattle Children’s and the biotech company Prevencio worked together to develop this type of test. We have applied for a patent and asked for approval from the U.S. Food and Drug Administration to use it with children.

Because 1 in 5 children does not respond to IVIG, we are testing different medicines. Dr. Portman is directing a multicenter research study to see whether patients do better over the short and long term when they get the new medicine etanercept (Enbrel) along with standard medicines (IVIG and aspirin).

More than 600 families have enrolled in Dr. Portman’s research to find genetic factors that make children more likely to get Kawasaki disease or that affect how they respond to treatment. One goal of this research is to find a way to predict which children will not respond to IVIG so they can quickly get other care that might help.

There is a high rate of Kawasaki disease in Asia. This has raised questions about whether certain foods might make children more likely to get the illness. Dr. Portman has published results of a study showing that eating soy isoflavone is linked with risk for Kawasaki disease.