THE NIGHTMARE WE SHARE

Personal stories of individuals and families affected by Kawasaki disease
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DanielleJ
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Posts: 7
Joined: Thu Dec 04, 2014 3:36 am

THE NIGHTMARE WE SHARE

Post by DanielleJ » Fri Dec 05, 2014 10:27 pm

My two year old daughter was diagnosed with KAWASAKI disease a few weeks ago, and if I hadn't have researched what she was sick from and what it could be, she would not have survived. I had to help diagnose her, and even then that was after I took her back to the hospital, because the first time I brought her in, we didn't know what was wrong, and thought her swelling, rash and fever was due to an unknown allergic reaction. I brought her back in the following Saturday because her symptoms didn't improve. On Saturday, the doctors and I after discarding Juvenile rheumatoid arthritis, and Scarlet fever decided to transfer her to the children's hospital in Portland. It was a nightmare. I researched everything on my own to find a diagnosis, anything, and found this disease and the Dr. asked if I had heard of KAWASAKI's disease I said I thought that this was probably it and they began treatment. It was a nightmare. She didn't eat or drink for a week, her skin peeled off her fingers and her feet, I was able to get her diagnosed and treated in 8 days, thus from what I've researched improving the chances for her heart to stay strong. I also found out she is deathly allergic to all milk products. I have her eating, drinking, ok for now, but because I am a single mom, right now all my income to support my children come from school, that I have not been able to attend because of her sickness... It's just her, me and her 8 year old brother. She has 2 more heart exams in the next 3 weeks. My first daughter died of SIDS while visiting her father. My 8 year old son almost died of tiki oil ingestion while visiting his father. And now my daughter my baby girl is given an unknown disease with no cause, no prediction, no knowledge and no cure.... All that's known, is there is a treatment, it kills the heart, and good luck.
1. WHY IS IT ALMOST NO ONE KNOWS ABOUT THIS DISEASE?
2. WHY AREN'T WE PARENTS WITH CHILDREN WHO HAVE KAWASAKIS BEING ASKED FOR OUR DNA, TISSUE BLOOD, OR TO FILL OUT EVEN QUESTIONAIIRES, TO HELP AID IN RESEARCH FOR THE DISEASE?
3. WHY ARE THERE NO RESEARCH BEING SENT OUT TO THE PARENTS TO TRY TO PROVIDE CORRELATION BETWEEN FAMILIES?
DANIELLE

atulp
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Posts: 14
Joined: Fri Oct 31, 2014 12:40 pm

Re: THE NIGHTMARE WE SHARE

Post by atulp » Sun Dec 07, 2014 4:14 pm

Hi Danielle. I'm sorry to hear about what you and your daughter have been going through. My 15 month old daughter was diagnosed with atypical kawasaki disease back in September and it was the scariest time of our lives. Like you mentioned, to have our children in so much pain and discomfort, to then hear the name of a disease you never heard of before, to hear there are no tests for it and that they don't know how or why our kids are being affected is overwhelming. Since our daughter's diagnosis I've been trying to learn as much as I can about the disease too. Here are a couple things that may help you as well:

1. http://m.youtube.com/watch?v=-ruiSZFaJeM
there are a few videos on YouTube from past kd symposiums. The most recent was posted just last month.
2. On the research link on this site there's a list of various research studies that you and your daughter can be a part of if you wish. It appears they are doing some studies to see if there is any genetic link.

It seems in the US that the University of California San Diego is leading a lot of the research overall on kd.

I hope your daughter is doing better and will keep your family in my prayers!

atulp
10+ Posts
Posts: 14
Joined: Fri Oct 31, 2014 12:40 pm

Re: THE NIGHTMARE WE SHARE

Post by atulp » Sun Dec 07, 2014 8:37 pm

Sorry, I realized on point #2 above I forgot to post the link regarding the research.
http://www.kdfoundation.org

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