CFC Benefits the Kawasaki Disease Foundation in June

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June’s Chores For Charity dropped into my lap unexpectedly on May 30, 2013 via CrowdRise.

I was drawn into CrowdRise when my husband shared a fundraiser led by Sarah Chalke for the Kawasaki Disease Foundation.   When Josie was 18 months old, she came down with a fever, not such an odd occurrence in a child who was in daycare a couple days a week.  On the 4th day of the fever, the doctors began to become concerned and started her on high dose antibiotics that needed to be injected into her arm on two different occasions.  She had a chest x-ray to look for pneumonia – it was negative. The fever persisted. Then she needed blood testing – have you ever held a toddler down and allowed 4 huge vials of blood to be drawn from her tiny arm?  I have and it was one of the most awful experiences of my life.  The tests showed high white blood cell count, high sed rate, high platelet count – all of which are typical in patients with Kawasaki’s Disease,  a rare childhood condition that can lead to long term heart defects.  But, she only had one of the other symptoms, swollen lymph nodes.  Her tongue did not look like a strawberry, her eyes were not blood shot and she did not have peeling skin or rash.  She was admitted to the hospital on her 8th day 103+ degree fevers.  The doctors diagnosed her with Atypical Kawasaki Disease, though there was disagreement about the diagnosis since she lacked so many symptoms.  She was given IVIG treatment on the 9th day of fever and responded well to it.  She was without a fever for the first time in 10 days.   Her stay in the hospital was prolonged when she picked up another bug just prior to her release.  In total, she was in the hospital for 7 days and our health scare saga lasted over two weeks.

As a parent in this situation, it is heart-wrenching to watch your child suffer and be unable to help her.  The number of tests that our little girl underwent while they were trying to diagnose her is staggering.  She had multiple chest xrays, multiple blood draws, strep tests, catheterization to collect urine for a urinalysis, and a CT scan.  I, like Sarah Chalke, just wanted answers and each time the doctors suggested a possible ailment the tests came back negative.  The path to a Kawasaki Diagnosis (particularly with Atypical Kawasaki) is a process of elimination.  Your child’s pediatrician tests for anything and everything it can be, and if it is not that, than it is presumed to be Kawasaki’s and treatment is given.  It would be such an amazing gift for parents and children to have a diagnostic test for this mysterious ailment.    Please support this amazing opportunity to fund research on a prototype of a diagnostic test that could be 95% accurate.  Even better, The Gordon and Marilyn Macklin Foundation will the first $100,000 in donations.  Please consider donating in any amount that you can.  Josie and I will personally thank you.

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Of course, Josie will donate her Chores For Charity earnings in June.  Won’t you join her in helping to ensure that the path to a Kawasaki’s diagnosis is shorter and more concrete?  The Hubs and I already kicked off the fundraising effort – I’d love to raise at least $500 for this cause.  Can you help?

 

If you are looking for information on Kawasaki Disease, I recently found a tremendous resource page compiled by a fellow KD mom.  Please check out Desperately Seeking Kawasaki  for articles, personal stories and more.   You should also visit the Kawasaki Disease Foundation website for information about diagnosis and treatment of KD.

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7 thoughts on “CFC Benefits the Kawasaki Disease Foundation in June

    • Your page is an AMAZING resource! I wish I had known about it when Josie was diagnosed. Do you write about your KD experience on your blog? I’d love to hear your story. My husband and I have often wondered about lasting affects from KD. For a year and a half after her diagnosis, Josie had unexplained fevers at regular intervals to the point where she was evaluated for other conditions. The fevers have subsided, but I have often wondered if others with KD had experienced this. Ever heard of this? Thanks again for reading and commenting!

      • Thank you so much! My goal is to get the list into the hands of as many parents as possible, so when their child is diagnosed, they HAVE heard of it! I have written about KD on my blog – links are on that page – but not specifically about our KD fight. I’ve started it… just haven’t finished it. It’s a hard write. :/ I don’t think I’ve heard of a child specifically getting fevers after KD, but I’ve definitely heard of parents saying their kids complain of things afterwards – like joint pain, headaches, and light sensitivity. Have you joined any of the facebook support groups yet? Check them out, they will give you SO much information! ((hugs))

      • I will definitely check out some of the resources on your page! And thanks for posting a link to our story. I am going to link your page to my KD story on here now. 🙂

  1. Its been 22 years since my son was diagnosed with KD… he is 25 now but I always wonder what the long term effects are on his heart. KD was not very well known back in the 80’s so it was hard to diagnose. I was extremely lucky that his Dr. had so much knowledge about it he knew it before we even made it into the room! Such a scary time when our little ones are so very sick! Thanks for sharing and I am grateful to be tied into this site and always looking for more information on the effects it has on the adults who had it at a young age.

    • I’m so glad you found this post and, for me, it is heartening to hear that your son is an adult survivor and so far is healthy. I will always wonder if there were lasting affects on my Josie’s body – I guess that is one of the rules of motherhood – we always worry about our children. I do hope that this research leads to a diagnostic tool to lead to quicker diagnosis. It is mind boggling that there is still so little known about this disease. Thanks for reading!

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