LIFELONG FOLLOW-UP CARE FOR ALL

[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

[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.

[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.

[AlwaysResearching]

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.

[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?

[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.