Sunday, May 6, 2012

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.





13 comments:

  1. Dani is such a lucky girl to have such a concerned Momma. <3

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  2. How inspiring! I think it's great that you are using your experience with this to share and connect with others. I'm looking forward to reading more about this disease.

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    1. Thanks for your support Lorel! I am looking forward to writing more about it..... no really, I am! LOL. I've actually been having trouble getting the story down on paper. I think it took more out of me than I'm willing to admit.

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  3. Good Day I am Trinidad and Tobago in the Caribbean 9 months ago my 13 months old son was diagnosed with KD at our local hospital i would like to know which is the best hospital to do a follow up can you recommend thanks

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    1. Hi, Shiva. I'm so sorry about your son! I hope he is on the mend. I am not sure whether you mean which hospital in Trinidad and Tobago would be the best hospital to go to; or whether you mean where is the nearest hospital that has a specific KD program. I'm afraid I know little about the hospitals in T&T and have never run across any KD experts or programs there, nor have I found any in South America yet. That certainly doesn't mean they don't exist! It just means I haven't found them yet. In a limited search, I found this site, and it looks like it may be of help to you - http://www.ps.org.tt/ . Considering how rare KD is, I would think you may have better luck searching for pediatric cardiologists instead of specific Kawasaki Disease experts. A pediatric cardiologist is going to be the best person to follow up with - who will perform and EKG and an echo, and who will probably know the most about KD. If I can be of further assistance, please let me know!

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  4. hi Leah, Thanks for the information. but what i ment we could come to the us,so i was wondering i have family living there so i was wondering if you could recommend a hospital in the us and a doctor thanks again for all your information.

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    1. Ah, ok. Well, if you are able to travel to anywhere in the US, these are the KD programs I have found and would recommend:

      Dr. Burns' team at Rady's Children's Hospital and University of California at San Diego - http://www.rchsd.org/programsservices/a-z/i-k/kawasakidiseaseclinic/

      Jane Newburger, MD at Boston Children's Hospital - http://www.childrenshospital.org/clinicalservices/Site468/mainpageS468P2.html

      KD Program at Children's Hospital of Chicago - https://www.luriechildrens.org/en-us/care-services/conditions-treatments/kawasaki-disease/Pages/index.aspx

      Dr. Portman at Seattle Children's Hospital - http://www.seattlechildrens.org/research/developmental-therapeutics/portman-research-group/kawasaki-disease-program/

      Contact information for each of those doctors can be found through the links I provided. For further information on KD, please click the link to the right - Desperately Seeking Kawasaki. I hope this helps! -Leah

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    2. thanks very much i think the one in boston is good for me i will get in contact with them again thanks very much.

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    3. You are very welcome, hope it helps!

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  5. Thanks for your post! I was indeed desperately seekinf for kawasaki disease. I am from El Salvador and the disease is rarele known here, My daughther is 1 year old and was diagnosed on the 8th day with Kawasaki disease, we were lucky to have been diagnosed on time and she was able to receive the IVIG on time. But...... 15 days after her first treatment the fever returned! you can imagen our concern, inmediately we ran more test only to have the doctor conclude she had Kawasaki again! We returned yesterday from the hospital and I am very concerned that she got it twice, can there be a 3rd time? will she be ok now? we have so many questions ..

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  6. I'm sorry it's taken so long to reply - I've been having trouble posting comments from the computer so I have to write this all out on my phone. Unfortunate, once a child gets KD once, they can get it again... and again. Fortunately, it is very rare, and since you've already been through this twice, you will know exactly what to look for and what to do in that situation. Do you have a doctor you trust? Write down all questions you can think of. Check out my KD Resource List and learn everything you can. And finally, join some Facebook pages and groups to get support from others who have gone through what you have and can relate to your fears. There is a long list on the Resource List. Please let me know if I can provide any other specific information.

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