My 11 year old was diagnosed with HCM

Posted by mommiesboy1 @mommiesboy1, Jun 2, 2018

Hi everyone, we are trying to deal with the news of my son being diagnosed with HCM. I've read article after article and I think I'm driving myself crazy. I just want to make sure I know all our options. Is there anyone out there in a similar situation with a young child that can give me advice?

@knecht

@ccubed . My daughter was diagnosed with Hypertrophic Cardiomyopathy at 16. She was the starting point guard on her varsity team and starting setter on volleyball team. She had a septal myectomy two and a half years ago at Mayo in Rochester, MN. Any questions please ask, I know the scared mom feeling you are not alone.

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@knecht and @mommiesboy1 I was diagnosed with HCM as an early teen, probably about 14. I missed some sports, but played football in college, backpacked and ran until about age 55. Now I am learning that what I really have, apparently, is Amyloidosis AL, probably Gelsolin or similar. I went through syncope, tachycardia, pain, broken teeth, purpura, sFLC, now have protein deposit in my cerebrum cortex, and seem to getting into dementia. Et Cetera…. I am now 78, and I need treatment now, but it is difficult to obtain. Doctors seem to forget that it is progressive, and what did not show two years ago may be killing now.. https://bit.Ly/1w7j4j8

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@cynaburst

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

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Children's Cardiomyopathy Foundation – https://dev.childrenscardiomyopathy.org/

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@drjhones

Children's Cardiomyopathy Foundation – https://dev.childrenscardiomyopathy.org/

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@drjhones, welcome to Mayo Clinic Connect. I noticed that you wished to post a URL to a web resource with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. I added the link to the Children's Cardiomyopathy Foundation to your post.

@drjhones, do you have a child with hypertrophic cardiomyopathy?

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@knecht

@ccubed . My daughter was diagnosed with Hypertrophic Cardiomyopathy at 16. She was the starting point guard on her varsity team and starting setter on volleyball team. She had a septal myectomy two and a half years ago at Mayo in Rochester, MN. Any questions please ask, I know the scared mom feeling you are not alone.

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My grandson was just diagnosed with Hypertrophic Cardiomyopathy, he is 15. Myself, his parents and family are terrified of this diagnosis. He was diagnosed with heart murmur at age 6 and the follow up echocardiogram didn’t show any issues. At age 13, they found that the left side of his heart was enlarged slightly, they did a wait and see approach. They thought it might be puberty etc. and hoped that he would outgrow this ( not sure if I’m saying that right). He is being sent to a Cardiologist at Vanderbilt Hospital for a cardiac MRI. That is all we know at this time.

At 15 the echocardiogram showed no improvement, and that his heart is two times the normal size, if I understood that correctly.

I was wondering about your daughters experience and symptoms before surgery and her success after surgery.

My son is so worried that this diagnosis is a death sentence. My grandsons only symptom is he out of breath when he plays strenuous sports.

Any information will be much appreciated!

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@knecht

@mommiesboy1 My daughter was a starting high school volleyball and basketball player when she was 16 she was diagnosed. She underwent a septal myectomy 2 1/2 years ago. Please any questions just ask. I know the scared mom feeling and Dr. Dearani that the mentor mentioned was our daughters dr. He was the best and we heard from a Anyone we ran into that we had her in the very best hands we could.

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What led to her having the surgery. My son was just diagnosed but he has no symptoms.

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