DJ’s Story

This is Kawasaki disease in Canada.

08/01/2019

Our journey with Kawasaki disease started in 2004. DJ was quite sick with a fever for quite a few days. After several trips to the hospital (always sent home with the same reason — viral just has to wait it out), DJ was finally admitted, at the advice of our family doctor — for what… the doctors were not sure, he just wasn’t getting better.

While in the hospital the paediatrician mentioned maybe Kawasaki disease, but said highly unlikely. When I had a moment, I Googled signs and symptoms of KD. DJ had presented all of them, but the doctor still thought it couldn’t be that. “No kid has all of the symptoms,” he said repeatedly. So with that, he didn’t complete any tests that could have helped with a KD diagnosis. Instead they did various tests for sickle cell and others. I would bring it up often that maybe it could be KD, only to be ignored.

Week 2 of our hospital stay DJ finally ate a bite of a cookie. The paediatrician that had been assigned to us wanted to send us home as DJ was improving and he continued to say, “it’s just a virus.”  With the advice of a nurse, I requested we stay at least until DJ no longer had a fever and can eat and drink appropriately.

By the end of our stay in the hospital, over 2 weeks, the fingertips and soles of DJ’s feet started to peel. Home we went. Discharged.

When the peeling seemed to get worse I contacted a different paediatrician who saw us right away. I will always remember what he said to me: “I am going to find out what’s going on as if this was my own son.” Immediately, off we went to see a cardiologist. “Your son has Kawasaki disease and there is coronary damage and unfortunately because of the amount of time since the onset he won’t be able to get the required treatment.” My heart sank — what does this mean??

Our journey has continued for the past 14 years. Weekly, monthly and then yearly cardiologists visits, stress tests, visits to SickKids, required to take an Aspirin ever since being diagnosed at the age of 2.5 years.

In June 2018, we received the news that DJ will have his next cardiologist visit in 2 years!! Damage is still there — has not improved and aspirin is still a part of our day, but otherwise we are fortunate that DJ is healthy. What does the future hold for DJ health wise? Good question, as we really do not know. DJ knows he has to be smart and make smart choices health wise and things will be ok.

Jackie
Whitby, Ontario

 

**Opinions expressed are those of the parent who has submitted this story.**