One year on from my Daughter's KD

Personal stories of individuals and families affected by Kawasaki disease
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One year on from my Daughter's KD

Post by jameslrsmith » Sun Feb 08, 2015 7:40 pm

Firstly hello. I am new here but have found a lot of interesting and moving things on here about Kawasaki's so wanted to share my daughters story.

Last August 2014 my eldest girl Isabella, who turned 3 the previous December, got sick. She had all the standard KD symptoms. High temp for days, red palms and soles of feet, strawberry tongue etc. She really wasn't herself either. It was soul destroying. I instantly looked up her symptoms on the internet, and yes as much as doctors say not to do it I am so glad that I did! I looked through as much info as I could and came to the conclusion that her symptoms matched KD the closest.

We took her to the hospital straight away and after looking at her they thought she might have had hand foot and mouth but I said straight away that her rash didn't seem like that and I thought it was KD. They actually took me seriously! She was whisked up to the children's ward and looked over. They tested her for everything else as we were told that there is not a definitive test for KD you just have to rule everything else out.

After about 3 days in hospital with no improvement and 6 days from the symptoms starting, her temp was still up and her eyes finally went red and that was the last thing, along with all the negative tests for other things. They told us they didn't want to wait any longer and wanted to start in the Immune Globulin treatment asap. After just a few hours of the drip being in she was better. More herself again. She continued to improve. She had to go to the leading paediatric cardiologist in Southampton UK for tests and they came back all clear.

She has since had further checks on her heart and we literally last week had her final heart echo and scan and she has been given a full bill of health.

But it hasn't ended for us yet. As I've read so much on here Isabella has struggled since having KD. She constantly complains about her legs and her joints hurting. She's always ill and seems to stay sick much longer then the rest of us. Including her younger sister. There just seems to be such limited information about KD so the long term problems aren't known or even mentioned. But I'm almost certain her health problems are because of KD. What can we do to help things? Or is there nothing we can do but just be glad she has a healthy heart and is happy?

Thank you all in advance. James.
Happy again with her little sister!
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The red feet...
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Just before treatment
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Re: One year on from my Daughter's KD

Post by hblack79 » Mon Feb 16, 2015 9:19 pm


I would discuss some of these lasting symptoms with her doctor - she may be dealing with some juvenile arthritis. I know I had some issues with joint pain after I was released from the hospital. My hands would freeze in an uncomfortable position and I was unable to move them without severe pain. Eventually that went away, but my doctor mentioned juvenile arthritis at the time and possibly prescribed me something for that. Since my diagnosis, I would say I've been healthy, but I've noticed slight changes in my body since then. I had never been allergic to an antibiotic and now I'm allergic to penicillin plus a few others. For a while, anytime I got hot, nervous, or worked out too hard, I would break out into hives again and swell in certain areas. I don't recall getting sick all the time after my diagnosis, but everyone probably handles it differently. I'm not sure what type of diet she is on, but that's another area I would consider looking in to. I personally believe in a Whole Foods Plant Based diet and I know it can make major improvements in your heart's health & in eliminating various heart diseases. I would suggest watching the Forks over Knives documentary or reading more about a plant-based diet and see if making some changes in that area help her heal quickly and prevent her from getting sick so frequently. Best of luck! :)

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