Desperately Seeking Kawasaki Disease

I haven’t written anything in a while because I’ve been dealing with a very sick kid.  My daughter just recently went through her second bout of Kawasaki Syndrome.  Yes, that’s right, my daughter has had Kawasaki Syndrome more than once.  I’m going to be mentioning that a lot because when terrified parents put “can my child get Kawasaki Syndrome twice” into a search engine, I want them to actually find something that may HELP.

I think I need to back up just a bit, though.  Considering only 19 out of 100,000 American kids will contract Kawasaki Disease, there aren’t too many people out there thinking about their kids getting Kawasaki Disease more than once.  Most people haven’t even heard of Kawasaki Disease.  Insert motorcycle joke here. 

If it wasn’t so terrifying when it’s happening to your own child, it would be a pretty interesting research project.  For one thing, it is an extremely young disease.  Dr. Tomisaku Kawasaki, a Japanese pediatrician, gave this disease its namesake and definition in 1967. 

Kawasaki Disease is a self-limited vasculitis that causes inflammation in the small and medium blood vessels of the body.  It most often occurs in children under five years old, but let me just address that “most often” phrase right now.  Don’t listen to it.  Not when it comes to Kawasaki Disease.  It has been my experience, that the very nature of this disease calls for the rare and uncommon to apply to your child.

Kawasaki Disease comes with a list of really weird symptoms including (but not limited to!) persistent fever for 5 days, chapped and cracked lips, swollen and/or strawberry tongue, swollen lymph nodes in the neck, swollen hands and feet, red palms and soles, and blood shot eyes.  The biggest cause for concern with Kawasaki Syndrome is the effect it has on the cardiovascular system.  According to the Kawasaki Disease Foundation, "Kawasaki disease is the leading cause of acquired heart disease in children."

The age of Kawasaki Disease can be both a blessing and a curse.  Much is still unknown about this disease, which is a big reason why it’s so scary.  There is no diagnostic test for Kawasaki Syndrome.  You can’t just draw some blood and run some labs; doctors must instead rely on observational symptoms and a thorough history, most often given by the parent.

There is also no diagnostic tool to tell us when the child is cured.  I learned this first hand when my daughter was not only diagnosed with a recurrence of Kawasaki Syndrome and A-typical Kawasaki Syndrome, but also Refractory Kawasaki Syndrome.  That’s basically a fancy way of saying the disease sometimes doesn’t go away with the standard medical treatment of intravenous immunoglobulin (IVIG).

But the fact that Kawasaki Syndrome is such a new disease brings with it hope for more information to come.  We can only learn more, which is a big reason why I was finally convinced to start writing about it.  This second Kawasaki scare was one of the most stressful periods of my life, but it also brought out in me strength I wasn’t sure I had.  I’ve finally been bitten by the “cause” bug, I guess.  I want to learn as much as I can.  I want to share that information with as many other parents as I can.  I want to help other parents during their struggle with Kawasaki Syndrome.  I want to help other children, just as brave and strong as Dani, to fight this disease. 

I’m going to be dedicating some personal blog space to this.  Not only to Kawasaki Syndrome in particular, but I also want to talk about how to navigate the medical system.  This is so important to ALL parents of sick children, but it has special meaning to parents dealing with Kawasaki Syndrome, because the diagnosis and treatment fall so heavily on the parents’ shoulders!

I’ve also started a Facebook page dedicated to Kawasaki Syndrome.  Desperately Seeking Kawasaki will be a place parents and caregivers can find information, but also a place to vent frustrations and find support from other parents who know what they are going through.  But I can’t do it alone! I need other parents and their individual, vital information.  The only way a page like this will be successful is with the sharing of ideas and information.

The only way to beat Kawasaki Disease is to work together.  Have you been affected by Kawasaki Syndrome? Do you know someone who has been affected? Please click over to Desperately Seeking Kawasaki, share it with those you think could help, and join me on my Kawasaki Disease Awareness journey.