Kawasaki Disease

As many of you may already know, Ken was hospitalized at Children's Hospital in Seattle this week. We just got home today. Last week Ken got a fever and a rash, he was seen in the ER here in Ellensburg and at his family dr, he tested negative for strep throat and they thought he just had a virus. On day 5, he still had a fever, rash, no appetite, red/swollen eyes, puffy hands and was irritable and fussy. I took him back to his family doctor and he referred me to a pediatrician in town. She was suspicious that he had a condition called "Kawasaki's disease," and called a specialist at Children's hospital to talk with them about it. After a few more blood tests in Ellensburg, we got the call that we needed to go up to Children's that night. Here is a picture of Ken the day we went up to Seattle.

A very sad and sick looking little boy. My mom and Emma drove up with us and we arrived at Children's around 11:30pm on Monday night and he was worked up in the ER. He got more blood tests, an IV, he had to have a catheter to get a urine sample and he had an EKG. At around 9am on Tuesday we were taken upstairs and admitted to a room on the medical ward where the team of doctors there assessed Ken.

Dr Feldman (the head doctor) was skeptical that Ken had Kawasaki's disease and ordered an echocardiogram. The echo showed an enlarged coronary artery that goes into the left side of the heart. Our team of doctors met with a cardiologist after the echo and it was decided that Ken probably has Kawasaki's Disease. This is an illness that young children, usually younger than 5 can get. They don't know what causes it and it can last from 2 weeks to a few months. There is no "test" to diagnose it, but a diagnosis is made when doctors see certain symptoms. Kawasaki's can cause swelling and inflammation of the small blood vessels in the body and can affect the vessels in the heart, which can be very serious. That is why an echocardiogram was done. The good news was although one of his coronary arteries was enlarged, there were no aneyurisms found, which can also happen with Kawasaki's and is even more serious. Ken was treated with a medicine called IVIG (intravenous immune globulin). It was given into his IV overnight to treat the inflammation that was all over his little body. He was also started on high dose aspirin, also to treat inflammation. The next morning he was looking so much better already!

Emma helped her little brother feel at home in his hospital bed. Ken was also started in a research study for a medication that is being studied as a treatment for Kawasaki's. About 20% of kids don't respond to the IVIG medication, but this new medication brings it down to about 5% with little side effects. Since it's still in a research study only half of the kids in the study will actually get the medicine, the other half get a placebo. Wednesday Ken was just under observation, to make sure he was getting better and not having any reactions to the medications. He had a good morning, but vomited a few times in the late afternoon, was fussy again and had a fever. He got a dose of Tylenol and the fever went away and stayed away all night. Thursday morning my boy was back to his spunky self. Smiling, playful, hungry and just looked so much better! Here he is in the window sill trying to push some buttons.

Emma was happy to be coming home too. Ken will continue on a lower dose of aspirin for 6-8 weeks. He will also need to be followed up by the pediatric cardiologist and need repeat echocardiograms in 2 weeks, 6 weeks, 1 year, then probably every 3-5 years. But he seems to be back to himself tonight, so we are very happy about that. I couldn't have been happier with the care we recieved through this whole process. He was diagnosed early on and started on treatment before his heart was damaged. Our doctors here in Ellensburg knew when things were not going right and referred us on to a higher level of care before he got sicker. The doctors at Children's were all just great also. We had lots of support from friends and family which helped a lot; just to know that people were thinking of us and praying for our little guy!