SADS Foundation :: Sudden Arrhythmia Death Syndromes Foundation

I'm looking for parents of children who have ICD's and think it would be good for their child to correspond with others. My son received a dual chamber ICD when he was nine after an aborted sudden cardiac arrest in our pool. Fourteen months later he had a lead fracture (Sprint Fidelis) and had both leads and his ICD replaced on December 24, 2007. I think it would be great if these kids could correspond online or even possibly meet if they find someone nearby. The kids can talk, compare, and share how they handle their feelings and different situations, (like missing phys ed.) etc. It would also be good for me to talk to other parents to see how they handle some of the things we've encountered at school, etc. Anybody else interested?

My son had his ICD implanted when he was 8. He has had it fire 5 times during one episode, but has been fine for a year and a half. It would be nice to know another child who has been through a similar situation. I don't know about your son, but mine was a very active and competitive child before diagnosis. It is hard for him to watch his friends and family do activities that he so loved to do.

My son's ICD has never fired, but he gets very discouraged when he cannot do what the other kids are doing. (like running the mile in gym) It is painful to watch and hear as he was very active. He has now become worried about weight gain because his activity level has decreased. I recently let him join track for grades 5-8. They meet only 2 times a week and have only one scrimmage and a meet this Saturday. It's very laid back and I offered to be at practice to help so that he could participate. Sometimes it's very unnerving watching him run or seeing how tired he looks, etc., but I need to do this for him. His outlook is that he has ICD and is on meds so he should be able to do things. For me, this is a compromise. I'm sure the pediatric cardiologist will just about croak when he goes on Monday and finds this out, but by then he will be done!