Patient Comments: Kawasaki Disease - Symptoms

What symptoms did you experience with Kawasaki's disease?

Comment from: Penny, 25-34 Female (Patient) Published: April 15

Shortness of breath, stabbing pain in my left side and migraine on the left side are my symptoms of pleurisy. I run into walls, and my speech is slurred. It has started about 3 weeks ago.

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Comment from: brem, 0-2 Male (Caregiver) Published: August 14

My son contracted Kawasaki's disease in 1982 when he was 9 months old. We live in Johannesburg and at that time no one had seen the disease. He was put in isolation, and had a barrage of tests which all came back negative. He was so ill he couldn't even cry... nothing the doctors did helped and I thought I would lose him. It was only after 5 days when the skin started to peel on his hands and feet, that one of the doctors remembered reading about Kawasaki's disease, and started treating him with aspirin. Following discharge from hospital, he had regular checkups for the next two years. It was a very scary time and I was always aware of the possibility that his heart could be affected. Now thirty two, he always was and still is sports mad and plays rugby, gyms and boxes on a regular basis.

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Comment from: nicole, 3-6 Male (Caregiver) Published: July 16

My son has Kawasaki's disease now. The first treatment worked. His was atypical. He did not get the rash. I took him to 3 different doctors begging for help and they kept saying it's just a virus. He could not move his neck, had blood red eyes, and fever. Then his feet started hurting so bad he could not walk. The first treatment worked. We are lucky to live in a place that has one of the best children's hospitals in the world. It saved his life.

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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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Kawasaki Disease - Treatments Question: What treatment has been effective for your Kawasaki's disease?
Kawasaki Disease - Describe Your Experience Question: Did you or your child have Kawasaki's disease? Please share your experience.

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