Our Experience with Kawasaki's Disease : Keira's Story
It was a cold February day in early 2009. Keira had just finished celebrating her first birthday surrounded by family and friends in an indoor playground. A few days later she developed a fever that we treated with baby acetamenophen, she recovered over three days as we kept ourselves composed trying to not overreact as any parent of a young child does with a fever. In my head I said, "Don't panic. It's just the flu. She will have more of these in the future," while comforting her as she rested. Shortly afterwards I noticed as I picked her up that her joints would make a cracking sound. I didn't think much of it at first until my aunt heard it as well. At this point Keira had already fully recovered from her fever, however over the course of the next week we didn't realize how serious this very first symptom was.
On February 15, the day after Valentines day, Keira developed another fever. I thought this was unusual but maybe the first infection had not fully recovered yet. I kept calm during this time, making sure she was staying hydrated and keeping an eye on her fever. Suddenly her temperature climbed to 103.5. I immediately administered Tylenol, her temperature did not come down as I kept checking in on her. She drank a lot of fluids so I was not concerned about dehydration but the fever would not budge. She did not eat anything over the course of 24 hours, although she tried. After 48 hours we took her to our family doctor whose office was just a five minute walk away. I told him about the symptoms and he suggested watching her for any other issues over the next 48 hours and if nothing had changed to come back in and he would send a referral to Sick Kids Hospital in Toronto. She likely had the flu and only needed an IV treatment to get her electrolytes back up so we needed to prepare for a bit of a wait when we arrived in Emergency.
When we arrived, we sat amongst other families with sick and injured children that appeared to be much worse than Keira's symptoms showed. We waited almost five hours with a few books and blocks to bide our time. Keira slept most of the time but tried with ravenous enthusiasm to eat something solid, each time she spat it out. We thought this was because of a sore throat that can often occur with flu symptoms. Doctors and nurses would walk by offering her a freezee while she waited as she was getting fussy. When we finally met with our assigned doctor she did a full physical; checking the whites of her eyes, her hands, her feet, her stomach, her back, her tongue. She asked us how long she was like this, we told her it had been going on for about four days but she also was sick the week before briefly. She took her temperature and was shocked to see how high it was and agreed it was time for an IV treatment, however she had another concern; something more pressing. She turned to us, looked us square in the eyes and said "Have you heard of Kawasaki's Disease?" Simon and I looked at each other, as we remembered reading an article about Jett Travolta, John Travolta's son. Panic started to set in. "I am going to talk to my colleagues and we'll come back and take a look at her again. Meanwhile I'll get a nurse to come and set up Keira's IV."
Simon immediately searched his phone to find any information on Kawasaki's Disease, as I held on tight to Keira while the nurse tried to find a viable vein for the IV. Another three doctors appeared in the room, a cardiologist, a rheumatologist and an intern along with the assigned doctor who had done Keira's preliminary assessment.
Kawasaki's Disease is a rare childhood illness that causes inflammation to the lymph nodes, veins, arteries and capillaries. Here is the list of criteria doctors look for when suspecting Kawasaki's Disease.
Symptoms that last a minimum of 5 days
A persistent high fever that does not come down with treatment
Swollen lymph nodes
Bloodshot eyes, without crusting
Red Palms and soles of feet
Rash on torso and groin
Swollen hands and feet
Red palms and soles of feet
In order to be diagnosed with Kawasaki's Disease, a patient must show at least five symptoms on the list.
On the day of this discovery, Keira was only 4 days into her illness but was in dire need of an IV treatment so they had to admit her anyway. The doctors asked if we had noticed any of the other visible symptoms; the red palms and feet and her deep cherry coloured lips. Under regular lighting her symptoms appeared just as bright and noticeable as one would be, under the weather with a high fever. Under hospital lighting it was much more apparent that they were not normal symptoms, they were symptoms that even bypassed our family physician. I felt terrible that I did not recognize that there was something worse going on with my baby. They immediately sent her in for x-rays whilst all this new information was swirling in my mind, then told us to head to the 7th floor where they were preparing her private room. When we arrived to her room we noticed Isolation signs outside her door. Anyone entering must be wearing all protective gear at all times. We still couldn't quite understand what was happening as nurses would come in intermittently, hooking up IVIG (Intravenous Immunoglobulin) treatments, administering high-dose aspirin therapy, doing echocardiograms and electrocardiograms (ECG/EKG). It was difficult for us but even more difficult for Keira.
We sat together for three days hoping for the best as doctors, interns and nurses came in to investigate. They asked us a variety of questions to better grasp an idea of what a Kawaski's case looked like. To give you an idea of the rarity of this illness affecting young children, there is one case in every 20,000 children in Canada and is the top cardiac acquired illness in children under the age of 5.
Thankfully everything turned out fine. She responded right away to the first IVIG treatment and they kept her monitored for an additional 24 hours. She recovered well, regaining her activity levels slowly taking about a month post treatment to really feel like she was back to normal again. She continued her aspirin therapy for an additional 40 days and had a clear checkup with the cardiologist six months and one year post treatment. She is now a thriving, social 12 year old girl who is incredibly active in school and participates wherever and whenever she can. I am so thankful for the staff at Sick Kids Hospital for being so attentive to her early symptoms even though she had not yet reached the 5 days of illness criteria. Had we not taken her in when we did and had she been eating, the outcome could have been vastly different.
If you wish to learn more about this illness please visit these other sources: https://kidshealth.org/en/parents/kawasaki.html
Disclaimer: This article is from our own experiences. If you are concerned about the health of your child or the possibility of Kawasaki's Disease, please seek immediate medical attention.