Has anyone had or had a child with Kawasaki Disease?

[Macaela25]

Just interested in the topic...I've been doing a lot of research lately. I was the
4th person in the US to be diagnosed with it (1976) and one of the oldest US survivors of the disease.

Even though it's a rare disease, there's a lot of misinformation out there (carpet cleaners come to mind). New studies show it's a genetic predisposition mainly in people of Asian descent.

Anyone out there with experience? I'm shocked at how many young adult survivors who seem perfectly healthy have massive heart attacks and/or require triple and quadruple bypasses caused by coronary lesions from the disease...and I'm also an "all things medical" nerd.

[CW&M Mom]

No experience but I"m a complete medical nerd as well

[Sherri1480]

I had never heard of this until I watched Chopped on the Food Network and one of the competing chefs Nate Appleman has a son who has this disease. I know he has some kind of charitable foundation, you might want to look into that, maybe he has more info. HTH

[crazy4clipping]

My son was diagnosed with Kawasaki's when he has 4 years old. We were actually misdiagnosed on 3 separate ER visits with Strep throat and the flu but after what started off as a half dollar sized rash on my sons back took over over half his body within a matter of hours and his fever struck at a terrifying 103 I knew something was very wrong, rushed him to his pediatrician who didn't even have to examine him that she had never actually seen a case but she thought she knew what it was. She sent us to the nearest childrens hospital by this time it was only 7 hours after the rash started and all of his extremities were swollen beyond recognition, his lips were so chapped they were blistered and he was short of breath. No one there seemed to really know anything about what to do next, or so it seemed to me, we had to wait for a specialist to come in we had a string of people including the head of almost every department wanting to take pictures and ask questions about our family history. The treatment started with 3 IV's mostly fluids to keep him hydrated and to break the fever, he did end up in the ICU borderline coma he was there for about 36 hours till they decided to do the IVIG which IMO saved his life in more ways than 1. Withing hours of the IVIG my son showed significant improvement swelling went down, fever was almost gone, he had become alert and could move his limbs again. The next day we got an ecocaridogram which came up clear and now we go for regular visits every 6 months so far so good.
Sorry this is so long winded this was a very emotional event in my families life, this was the hardest 9 days of life and when we went in my son was completely non verbal (at the time undiagnosed Autism) and on the ride home he had said his 1st words, well phrase "look it's a tree". There is still so little known about the disease just small tidbits, usually found in male children under 6 of asian descent and almost nothing is known about the long term effects.
I must say I am happy to see that the disease is getting out there more. We need more information so that treatment and diagnosis can be more prompt.

[chitownmelli]

Our little cousin had it at 4 years old. We heard about the carpet cleaner thing too - strange. I don't really know very much about it other than MIL and I had to look it up and learn all we could because he was in our daycare and we wanted to make sure that if anyone else needed to see a doctor because of exposure to the condition (we had never heard of it before that day, and she was a nurse before daycare!!!) that we knew what to tell the parents.

[Macaela25]

Wow, crazy...I can't believe that it took the hospital that long to figure out treatment...IVIG is the gold standard for treating KD.

The scary thing about the disease (other than the fact that it can be fatal), is that it can cause extensive heart damage that often isn't found until young adulthood. Good thing that your son's medical provider is proactive in monitoring his heart - he's at a much higher risk of developing pediatric heart disease.

There was no treatment other than hydration until recently...you just hoped the kid's immune system could withstand it. Funny thing is about the Asian descent thing....my great-great grandfather was Mongolian Russian. That's WAY the heck back there...I would certainly never think of myself as Asian descent. Just goes to show what a tenacious disease it is.