All you need to know about Kawasaki disease
Little Nyah Mendes was just three years old when she contracted Kawasaki disease. Her mother Aysha is editor of the British Journal of Cardiac Nursing and was interested to tell her story from a personal and professional point of view.
“Nyah had a fever for close to ten days by the time we took her to the hospital. Her temperature was hovering between 38-41°C; she had a rash and was itchy on her hands and feet; her eyes were red and extremely sensitive to light; her neck was so stiff she couldn't move it; she had a headache and felt a bit dizzy; she was very tired, with an awfully reduced appetite; and her lips were red, swollen and cracked”.
These symptoms are classic Kawasaki. Fever for more than five days is one of the first signs; a red (or pink) body rash, red eyes, red hands and feet, red lips and a “strawberry tongue” are others. (And so the Kawasaki Disease Foundation urges people to “wear red” once a year to raise funds and awareness).
Lymph nodes in the neck may also be swollen. Trouble is, the symptoms seldom appear straightaway, often appearing sequentially.
“I took her to the doctor who just told us to keep her fever down with paracetamol and come back if it persisted. A few days later, I took her again and was given antibiotics for what the doctor thought was an ear infection. I think we went to the doctor three times before she finally said we should take Nyah to the Sick Kids Hospital here in Toronto as nothing was bringing down her fever”.
Diagnosis is difficult with Kawasaki because the disease mimics many others. Misdiagnoses include measles, scarlet fever and glandular fever. Aysha advises parents to “listen to your gut. You know your children so best not to let a doctor persuade you that it's nothing to worry about when you know something isn't right. Insist they are seen by the necessary specialists and then take it all in your stride, and don't let your kids catch onto your worry”.
“Once we took her to Sick Kids Hospital, the doctors said she had a partial presentation of Kawasaki disease and suggested we treat her with a dose of intravenous immunoglobin overnight (a protein drip) followed by high-dose aspirin, and then a low dose of aspirin over the following six weeks”.
Although aspirin is not normally given to children, its use in Kawasaki can help to reduce the fever. The protein drip helps to reduce the immune attack (since overreaction of the immune system is thought to be the cause of Kawasaki).
It’s important that treatment is timely: a delay can allow damage to the arteries supplying the heart.
“The treatment was highly effective as her fever came down within an hour or two of the completion of the treatment, which I believe lasted about ten hours or so. Her appetite came back, and she began coming back to life, which was a wonderful relief for us to see.
When I look at Nyah now, I can't believe she ever went through that episode. At the time, I was imagining the potential of her living with a long-term condition and how this might affect her life as a young child, and throughout her life. Now, she's perfectly healthy, and hasn't had any kind of recurrence. She's just a regular five-year-old girl, jumping around monkey bars, endlessly playing make-believe, and giggling about jokes sometimes only she understands”.
For some though, the outcome can be a lot more serious, even fatal. Kawasaki disease can lead to aneurysms in the arteries supplying the heart (blood-filled, balloon-like bulges that can burst). Heart failure, heart attack and abnormal heart rhythms can also result.
With Kawasaki disease, there are more questions than answers. Here are four key questions.
- What triggers the overreaction of the immune system? Candidates include bacteria, viruses, fungi, chemicals, carpet cleaners, and a diet rich in soy.
- Why is the number of cases of Kawasaki increasing year-on-year?
- Why is Kawasaki more common in people from East Asia (even if they now live in other parts of the world)?
- Can your genetic make-up increase chances of contracting Kawasaki?
When it comes to Kawasaki, the words of author Mark Haddon come to mind: “Lots of things are mysteries. But that doesn't mean there isn't an answer to them. It's just that scientists haven't found the answer yet.”