“Kawasaki disease?" That’s what I said too when my child was diagnosed

“Kawasaki disease?” That’s what I said too when my child was diagnosed

To say that the experience of having a child with Kawasaki disease was traumatic is an understatement. And we were one of the lucky ones.
Andrea Christie-David

As a parent of a child who had Kawasaki disease, I have to admit that when I read the news that there was a potential link between coronavirus and Kawasaki, I froze.

To say that the experience of having a child with Kawasaki disease was traumatic is an understatement. And we were one of the lucky ones. My daughter walked away with no lasting impacts, but the days that you have to wait until your child is diagnosed, and then treated are terrifying. I wouldn’t wish that on any parent.

Researchers have cautioned the public from linking coronavirus to the increased presentation of children with Kawasaki disease, as the link has not been proven and some children are presenting with symptoms similar to Kawasaki, whilst others are experiencing toxic shock. Doctors have, however, recognised that this is a great opportunity to raise awareness of Kawasaki disease so parents can identify it in children, allowing for early diagnosis and treatment.

What is Kawasaki disease?

Kawasaki disease is an auto immune response to an infection, causing an inflammation in a child’s blood vessels, particularly around the heart. Although researchers don’t know the true cause of Kawasaki disease, they do know that it can be any type of infection, even a mild asymptomatic one, that causes the body’s immune system to respond with Kawasaki disease. There is a higher prevalence of Kawasaki in children of Asian descent, and children under 5 years. Researchers also know that wind patterns can see increases in Kawasaki disease in certain countries at particular times of the year.

My experience of Kawasaki

In my case, my daughter had a mild cold for a few days before she presented with Kawasaki disease. She was two and a half and attending childcare, and we all know how often children get colds when they go to childcare, so it was all pretty run of the mill. But after a few days of the cold persisting, something prompted me to check her temperature on my way to bed, and to my surprise it was 41 degrees. She hadn’t had a fever until that point, and to appear so high out of the blue was quite a shock. The following day I took her to my GP who advised me to regulate the fever with Panadol and Nurofen, then bring her back if the fever didn’t break. Another day passed and her hands were suddenly swollen and looked like she had dipped them into a pot of pink paint and the paint had completely absorbed into her skin. She still had a fever, was now rejecting the Panadol, and was increasingly irritable. I called the GP, who had advised me to take her straight to emergency.

Sitting in the children’s emergency waiting area, we were advised by a triage doctor that it might be a rare illness, and when pushed, she reluctantly told me that it could be Kawasaki disease. I had no idea what Kawasaki was, and why would I? I also didn’t know that I would have to wait it five days, watching my child deteriorate, before a diagnosis could be finalised and treatment could begin. This is no fault of the medical system, but due to the fact that the disease can only be diagnosed after the symptoms persist for five days and other potential infections are ruled out, as the treatment for Kawasaki is very harsh on a little person’s body.

My husband flew in early from an overseas trip and came straight to the hospital the morning after we were admitted, shocked at the site of his otherwise bubbly little girl. She was drawn out, grey in colour, still had the pink rashes on her hands, and they had now expanded to her feet and body, and she would hardly sit up in bed. Despite her limp appearance, the paediatrician kept telling me she just had a cold, as rhinovirus had appeared in her test results. I pushed the registrar to conduct a review of her case as I knew that this wasn’t just a common cold. Another 24 hours’ worth of tests, cannulas, spikes in fever, an even less responsive child, and a consult from the amazing Dr Singh-Grewal, an Australasian expert in Kawasaki disease, finally resulted in a formal diagnosis.

Treatment for Kawasaki

Day five and we had a diagnosis, she presented with high fevers plus four of the five symptoms, which was classified as atypical Kawasaki disease. She had conjunctivitis, swollen lymph glands, rashes on her body and swollen extremities, but she did not have the strawberry tongue or deep red lips, the fifth feature of the disease.

Treatment began on the morning of day six where she was given immunoglobulin (a blood product) intravenously. After another 24 hours of observation in the hospital we were discharged, at which time the registrar told me that she had never seen a situation where mother’s intuition was wrong, and applauded me for advocating for my child and raising the issue with her.

Unfortunately, the story doesn’t end there for most, and this is why I am grateful for our outcome as compared to many of the children who aren’t as lucky. One of the impacts of Kawasaki disease is that it can cause aneurysms in the heart, which are usually only identified by a follow up echocardiogram many weeks after diagnosis. The risk of aneurysms increases significantly if a child is not treated before day ten, which is why doctors are encouraging increased awareness of the disease in the current climate.

The waiting game until you find out whether you child has had an aneurysm is a painfully slow and anxious time, and in cases where the child has experienced significant coronary aneurysms, they may require ongoing treatment for their heart condition. In rare cases, the aneurysm in the heart can cause death, as we are now seeing during the pandemic.

Heightened vigilance

Reflecting on my experience of Kawasaki has made me realise that it subconsciously impacted my parenting style to be a bit more vigilant about infection, and also resulted in me setting up a business that now supports vulnerable children and families, and advocates to Government on their behalf, something I discuss in my Women’s Agenda Extra mini keynote. My daughter is now in kindergarten and of good health, but even with a low risk of recurrence of Kawasaki disease, my husband and I have made the decision to keep her out of school until it is compulsory to send her back.

In regards to the coronavirus pandemic, what we are seeing overseas is a delay between the spike in coronavirus infections and Kawasaki disease presenting in children. For this reason, we may be fortunate that this time has already lapsed in Australia and we have dodged a bullet. But let’s just hope that, as a society, we continue to remain alert to the fact that the virus is still present here and do our best to keep infection rates low, our children safe, and Kawasaki disease at bay.

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