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My 11 year old was diagnosed with HCM
Hypertrophic Cardiomyopathy (HCM) | Last Active: Oct 6, 2021 | Replies (19)Comment receiving replies
HCM in kids is sort of unusual, but certainly not unheard of. Is your child being treated at Mayo Clinic? They have among the best doctors for HCM in the world. The most important thing with HCM is to find a doctor who has experience with HCM. This is really critical. HCM is now a very treatable disease. But the first thing you need to know is whether your kid would benefit from an ICD and the second thing to know is whether he is obstructed.
Does anyone else in your family have HCM? Do you have other kids? If so, genetic testing might also be indicated.
Another resource you may want to check out is the Children's Cardiomyopathy Foundation - http://www.chidrenscardiomyopathy.org
They can help you find others who are in a similar situation.
Wishing you all the best,
Cynthia
Replies to "HCM in kids is sort of unusual, but certainly not unheard of. Is your child being..."
One last thing. How would I go about having my son seen at the Mayo Clinic if we're in California?
Children's Cardiomyopathy Foundation – https://dev.childrenscardiomyopathy.org/
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Hi Cynthia
He is not being treated at the Mayo Clinic. Yes he does have the obstruction which causes the mitral valve regurgitation. He does have an appointment to do the genetic testing, and his younger a guest his younger sister just had an echo and they do you see the same condition without the obstruction and they said it's really minor that for right now they were only monitor her every six months with no medication needed as he is on a beta blocker. I will get more information hopefully from his doctor and ask him about the ICD because I'm not I am not sure of. Thank you so much for the information.