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Re: LIFELONG FOLLOW-UP CARE FOR ALL

Posted: Fri Jul 20, 2012 2:22 pm
by Nancy
hi

Since you were originally treated at Sick Kids...I would email Brian McCrindle there...wonderful KD physician and some of his research
is concerned with long-term effects. He would be able to give the best advice !

His email is: brian.mccrindle@sickkids.ca

best
Nancy

Re: LIFELONG FOLLOW-UP CARE FOR ALL

Posted: Mon Nov 02, 2015 6:00 am
by Livlifefree4ev
Has anyone hd issues with a KD surviving child gaining weight unexpectedly? My son had KD when he was 6, now he is 11 and for about the last 2 years he has blown up like he is all swollen everywhere. Doctor says its just his build. None of my kids have ever done this and he doesn't eat anything to be like this.

Re: LIFELONG FOLLOW-UP CARE FOR ALL

Posted: Fri May 24, 2019 2:47 am
by Littlebean
Yes...I have. My son was a agile and active and that at age 7 he suddenly bloated. I admit he is fond of eating but we done make fried stuff at home and fast food is very limited. How at age 9 he is close to a 100lb and has trouble with sports at school.
currently we are doing a cleansweep of the kitchen and removing all possible tempting stuff like cookies etc.

Re: LIFELONG FOLLOW-UP CARE FOR ALL

Posted: Sat Jul 13, 2019 3:15 pm
by AlwaysResearching
Livlifefree4ev wrote:
Mon Nov 02, 2015 6:00 am
Has anyone hd issues with a KD surviving child gaining weight unexpectedly? My son had KD when he was 6, now he is 11 and for about the last 2 years he has blown up like he is all swollen everywhere. Doctor says its just his build. None of my kids have ever done this and he doesn't eat anything to be like this.
Yes my son did as well, around 7 or so is when it started. He stayed that way through high school but then developed anorexia. He got through that and so far so good, he's at an extremely healthy weight for his age and height. He's 25 now. I hope that provides a bit of hope. :)

*As an aside, although he's at a healthy weight he does have heart issues. So far a bruit and a murmur, with testing coming up. No damage found in his arteries during his echos during his immediate post-KD.

Re: LIFELONG FOLLOW-UP CARE FOR ALL

Posted: Tue Oct 15, 2019 5:39 am
by Hebello
How long did the struggle last for your son? In other words, how long did it take for the healthy weight to settle in for him?

Re: LIFELONG FOLLOW-UP CARE FOR ALL

Posted: Mon Dec 16, 2019 8:30 pm
by Hoober
I can't second this enough. I contracted KD in 80. I was considered cured when discharged at 18.

I recently went through a triple bypass tied to calcification and early onset CAD, likely due to Kawasakis. As your children get older, instill the importance of ongoing care.