Kawasaki Disease: The Ali Chronicles

Today, we begin a series of articles on our experience with Kawasaki Disease. This series is not meant to replace professional medical advice. It is merely a re-telling or a sharing of what we/Ali went through from June 13-June 30 in the hope of informing more people about the disease, encouraging other people who may be going through the same thing, and maybe getting enough people interested in the disease so that eventually, we may be of help in assisting indigent/needy patients with Kawasaki. Considering the cost of the medication and the possibility of cardiac complications, proper and timely diagnosis is key. Much of the information you will see here and in the coming days will have come from our own readings and our talks with Ali's doctors - whom we shall not identify - until we get their permission. We are writing everything down as best as we can remember.

The way doctors have characterized the disease is that it is "not common but not uncommon." True enough, as we talk to friends and relatives about our experience, more and more we come across people who say: "My officemate's son..." or "My sister's friend's kid..." To date, there is no known cause of the disease. I have been told that "it is not bacterial" nor is it "viral" - but since the cause is unknown, I suppose we cannot know with certainty. All that is known is that the disease has very definite symptoms and is common to Asians (mostly Japanese and Korean) in the age range of 5 and below.

The disease is named after the doctor who discovered it in Japan in 1967 (the year I was born - so the disease is as old as I am?). Ali's doctor mentioned that a Kawasaki case was first recognized in the Philippines in the 1980's and since that time, about 4 to 5 cases are seen every month, in different hospitals. There have been several hundreds of cases since it first appeared in our country.

At the time that we were in the hospital, there was a 1-year old kid with Kawasaki - when Ali got her first treatment. For the second treatment, there were four other kids. After we had left the hospital, Ali's doctor had a 10-month old baby and a 1-year old Kawasaki patient again, one after the other. That's more than the 4-5 cases a month - and that's just in one hospital.

When a patient has Kawasaki, there is an infection/inflammation in the body. There is likewise the possibility that there will be cardiac complications (e.g. coronary artery abnormalities/swelling) and this is what the treatment actually guards against.
The thing is, not all patients respond the same way to the treatment so it can be quite frustrating. It likewise takes a lot of time.

"With Kawasaki, the more you see, the less you know..." - that's a quotable quote from one of Ali's doctors. Yes, doctors - we had a team of four - an infectious disease pedia, a rheumatologist, a cardiologist, and a neurologist. To all of them and to all the hospital staff, we extend our thanks for their taking care of Ali.

Next time: What are the symptoms? What do you watch out for?