My journey as a Kawasaki disease mother began in November 2014. That fall, soon after my oldest daughter turned two, she developed a severely high fever, consistently over 102° fahrenheit. Up until this point, she had been in excellent health, save for the occasional cold or flu virus. I remember that she was consistently hot and flushed, and we weren’t sure why. As a new parent I knew that there was something very wrong, but I wasn’t certain what it could be. We couldn’t figure out what it was, and slowly but surely the doctors ruled out viral infections, fifth’s disease and strep throat. She had countless tests that week and two walk-in visits. Tylenol and Advil weren’t helping despite alternating them at regular intervals. Three days in, she developed a very red rash on the surface of her palms and the soles of her feet. Since her fever was so high, I thought it might have been a fever rash. I have a very distinct memory of sitting by the bath, looking at her feet, and being completely bewildered by them. By Friday, 5 days after the initial onset of the fever, things hadn’t changed so we went back to the walk-in. By that point, her sclera of eyes had started turning very red. The doctor took one look at her and told us he was sending us to the emergency room. He said that he suspected Kawasaki disease but it needed to be confirmed by the hospital.
The next week and a half were a whirlwind that I will never forget. We quickly made the decision to drive downtown to Sick Kids Hospital in Toronto. When we got to the ER, she was almost immediately diagnosed with Kawasaki’s disease – a very rare inflammation of the small blood vessels, characterized by a very high fever, and red palms, feet, tongue and eyes. The risk with the disease is that the vessels around the heart can also become significantly inflamed, which could lead to coronary complications or failure, and if not treated immediately would be fatal. It must be treated in the first week to reduce these symptoms. While we were waiting to be admitted, we did our own research and read about the countless children who were left untreated and died from coronary failure. This only fueled the anxiety and panic.
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