My 11 year old was diagnosed with HCM

Dr Dearani did our daughters surgery the best there is!

@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.

@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

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

@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?

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!

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

I get this thread is older but I'm commenting in case a new parent shows up looking for similar answers. I had sudden cardiac death 16 years ago. I was out for a run. John Doe, coma for a week, loss of short term memory for a few months . . . it was dramatic but I survived. I live in Seattle but was seen by Dr Barry Maron in Minneapolis for a few years at the start (he's now in Boston and I've got a doc in Seattle.) I was confirmed with HCM (apparently, the SCA was "diagnostic." 😉 ) At the time there was a gene research project going on out of Harvard Health that I got into. They found a gene mutation. Both my kids were tested; my daughter has the mutation & my son does not. My sister and my father both subsequently tested positive for the gene.
I was non-obstructive & non-symptomatic at the time i had an SCA. I understand this is extraordinarily rare. The guidance used to be that if you are gene positive or have any obstruction, then kids should stop all sports. They are now relaxing that quite a bit. My 15 year old daughter is not an athlete (because of the guidance we received) but I ride my bicycle roughly 5,000 miles per year and am quite active (although, I'm not one of the fast kids . . . HCM evolves and heart becomes less effective at "refilling" after blood is pumped.) Guidance these days is that exercise, especially more endurance based, helps the heart "re-model" to accomodate some challenges presented by HCM and can actually improve outcomes for HCM patients (while SCA during athletics with HCM patients is actually much more rare than had been once believed.) There's a study in the American Journal of Physiology. I am a "newbie" here so cant post links but the title of the article is "Exercise in hypertrophic cardiomyopathy: restrict or rethink"

Hi Jbrooks, welcome. You’re right. As a newbie, you can’t post links. 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. Please allow me to post it for you.

- Exercise in hypertrophic cardiomyopathy: restrict or rethink https://journals.physiology.org/doi/full/10.1152/ajpheart.00850.2020