Recently diagnosed with KD

Personal stories of individuals and families affected by Kawasaki disease
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frew0810
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Recently diagnosed with KD

Post by frew0810 » Tue Jul 30, 2013 6:55 am

My 5 year old boy was recently diagnosed with KD. Started off with rash, high temp and cracked lips. Diagnosis came on day 8 when he received IVIG and high doses of asprin. The skin on his hands started to peel on day 9 and on his feet on day 15. We are home from hospital now and he is doing good. Appetite and energy are not what they were yet. I notice his skin has become very dry and itchy at times so I am using lots of moisturising cream. His first echo on day 10 was clear and we are back for another echo at the end of Aug and will see the cardiologist then too. It has and continues to be a worrying time since we do not know the long term effects of this disease on his heart. I guess I am wondering will he be limited as regards physical activity eg football etc into the future. And is there a possibility that his next echo could show changes even if the first one was clear??

frew0810
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Re: Recently diagnosed with KD

Post by frew0810 » Wed Aug 28, 2013 10:35 am

Echo clear but for mild murmur (which I am told is nothing to worry about) So pleased. Asprin stopped. No cardiology or paeds follow up. Is this the norm? We are 6 weeks post treatment now. He is doing well, complains of sore feet if he walks too far but otherwise good. Would really appreciate some responses as this is all so new to me and wonder if I was worrying unnecessarily.

BrenH
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Re: Recently diagnosed with KD

Post by BrenH » Wed Aug 28, 2013 1:15 pm

My 2 yr old son was diagnosed with KD 5 months ago. He was treated on day 11 and his arteries became inflamed. He's had two consecutive "normal" ECHO's and he is super active now.

He just got his first bout of illness 3 days ago. It freaked me out. I monitor him every minute and make sure non of the KD symptoms came back. I think he might have strep, so we got an appt with his pediatrician tomorrow morning. Poor guy has a hard time swallowing and he's lost his voice. Before we go anywhere, I always ask the people we are meeting to make sure they are not showing any signs of sickness, or else we will just stay home. Last week, we had a family party and one cousin thought it was ok to bring her febrile kid who was exposed to roseola at school. She didn't tell me until I emailed everyone that my son has a fever a couple days later. I'm still beyond angry at her. Three kids ended up getting sick after that party.

I had the same questions and fears that you have. I worry about his diet and I worry about his physical ability growing up. You're not alone. After reading everyone's posts on here, it looks like being a paranoid parent after KD is normal. Even before his current sickness, I checked his temperature every day. The second he got a fever, I had to excuse myself and I just cried in the bedroom. It brought back all the emotions that I went through during his KD episode. I don't know when this state of panic will ever stop. I just try to stay positive and strong in front of him. Being a single mom, it helps to have a forum like this just so I can have people I can relate to.

Nancy
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Re: Recently diagnosed with KD

Post by Nancy » Wed Aug 28, 2013 7:56 pm

hi

I know it's hard to believe now...but, parental worries do abate over time :)

Yesterday was the 11th "anniversary" of when my son was diagnosed with Kawasaki Disease and we rarely think about it.

He was older than most kids at age 7.5 yrs, so he remembers the entire experience and has been active for ten years in helping to
raise awareness of KD through the American Heart Walk and speaking about KD and doing interviews for local TV and radio.

I worried as much or more than most when he was sick...and emailed his pediatric cardiologist with questions for months after he
had recovered :) But, since he did make a full recovery, time does give perspective (different story for children left with cardiac complications).

He has had only one "sick" visit in the 11 yrs since he had KD. He just graduated from high school where he played varsity soccer for four years as well as premier league soccer. He runs community (5K) road races for fun and fitness. For the past four years he has run 5 miles a day almost year round both for fitness and good health. He eats a healthy diet and has healthy blood pressure and BMI.
Next week he leaves for college to pursue a Doctor of Pharmacy degree, having had his interest in a healthcare career begin way back in 2002 when he was treated for KD :)

best,
nancy

BrenH
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Re: Recently diagnosed with KD

Post by BrenH » Thu Aug 29, 2013 11:39 am

Nancy.... THANKS SO MUCH for your post. I love hearing these stories. It gives me so much comfort and hope for my child to have a normal healthy life after KD. I truly appreciate you taking the time and telling us your story. I have my son's pediatric cardiologist on my speed dial list.

I'm happy for your son and all of his accomplishments. Good job mom!!!!!

frew0810
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Re: Recently diagnosed with KD

Post by frew0810 » Thu Aug 29, 2013 4:55 pm

Bren and Nancy thank you for your replies. I do appreciate you taking the time to respond. I suppose it best to try to move on and try to put this whole episode behind us now. Bren I envisage I will be like you and worry continuously about every illness and temperature he gets. But I know this will pass and perhaps by me being overly anxious and preoccupied with his health I may be doing more damage to him so I suppose I need to let him get on with it and do all the things all boys his age get up to and get back to normal. Nancy so pleased to see your boy has done so well and proof that the future is bright. Yes this forum has been great, have spent much time reading through everyones individual stories. As parents we need to keep up to date with whats new and up to date research. Again thank you.

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