Patient Comments: Kawasaki Disease - Symptoms

What symptoms did you experience with Kawasaki's disease?

Comment from: Ellen, 7-12 Male (Caregiver) Published: December 17

My son, who is nine, had myalgia for two weeks and the doctors did not know the cause, some thinking it was "post viral syndrome" a recurrence of symptoms from fifth disease that he had had two months earlier. In the third week he spiked a fever and was diagnosed with strep. He did not respond to antibiotics and on the third day of fever he developed a rash. The doctors kept saying the rash was from the strep but to me it looked different. I finally gave up on the pediatricians and took my son to a pediatric neurologist. He thought it was Stevens-Johnson, an acute allergic reaction to the antibiotics. When he saw us a day later, and saw that my son was getting worse, he sent us to the emergency room (a children's hospital) where, thank goodness, he was diagnosed with Kawasaki. He had all of the symptoms except for peeling fingers, which he now has (one week later). He was treated with IVIG (Intravenous immunoglobulin) and his symptoms subsided, although his fever returned after a few hours. We thought the treatment failed, but the fever subsided, and two days later we were released from the hospital. He is still very weak, although getting better every day. His fingers are continuing to peel and on his elbows, as well. He is taking aspirin, and we have a follow up with a pediatric cardiologist in a couple of weeks. It is startling to me how close we came to a tragedy; he was diagnosed on day 7 of the Kawasaki and treated on day 8.

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Comment from: Amanda, 7-12 Male (Caregiver) Published: December 27

My nephew was diagnosed with Kawasaki's disease shortly after his 7th birthday in 2012. I recall him staying home from school on his birthday because he had what we thought was a cold. He was taken to the children's hospital and at first he was sent home with a diagnosis of the flu. At the time he was taken to the hospital, he had a fever around 105 if I recall correctly. I remember visiting him at the hospital, where I saw that his skin was peeling on his hands. He was in the hospital for at least a couple of weeks and treated with immunoglobulin. Even then, he had to stay home from school for a month to make sure that he was healthy enough, and had to have his heart checked out on a few occasions. I believe they said that his heart was slightly enlarged as well, when he was sick.

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Comment from: lollie grand, Female (Caregiver) Published: May 01

My daughter, who is now 26, had Kawasaki disease at around 18 months old. She was hospitalized for 10 days and had IV therapy, aspirin dosing, EKGs, and regular platelet drawings for 6 to 8 weeks as follow-up. She was released with no further follow-up and with a normal prognosis. She has always been very healthy, exercises, is a marathon runner, has a healthy diet, etc. She works full-time and lives a normal lifestyle for one her age. She has had a few symptoms off and on that can be described as arthritic pain. I told her it could be a consequence of the Kawasaki, since there does not seem to be any other explanation. Has anyone ever heard of this happening as an adult from childhood Kawasaki illness?

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Comment from: Shellber, 25-34 Female (Patient) Published: July 18

I had Kawasaki disease as a child. I had a high fever, rash, swollen red hands and feet. I was treated and was fine. No one told me or my family to have an echocardiogram yearly. I am 34 now and have premature ventricular contractions and other symptoms similar to lupus. I had blood drawn today to check for lupus. I never thought to mention to any doctor that I had Kawasaki disease as a child.

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Comment from: jscruggszoo, 45-54 Female (Patient) Published: July 18

I was diagnosed in 1966 at age 1 1/2 with Stevens-Johnson Syndrome, but I now feel it was actually Kawasaki Disease. I had the persistent very high fever, peeling of genitals, hands, and feet, and had a 'heart murmur' a year later, at age 3. Mitral valve prolapsed was discovered just a few months ago (I'm now 46). The reason I am writing is to alert anyone diagnosed w/Stevens-Johnson before the mid-seventies that they might actually have Kawasaki Syndrome. SJS always made me worry that there was some drug to which I might be allergic. Now I know that I need to get regular EKGs, as does anyone else w/Kawasaki Disease.

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