My 11 year old was diagnosed with HCM

I'm sure there are all manners of HCM...I am 81 and have only been on medication for it for 3 or 4 years. The muscle of my heart has enlarged as I understand it so that it is restricting the blood flow. The medication helps this. The doctor said I was born with this and nothing I could have done to prevent it. Your sons case may be different. It is good to find out as much as you can. It is my understanding that usually it can be managed. Hope this helps a little.

Thank you for the information.

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

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.

One last thing. How would I go about having my son seen at the Mayo Clinic if we're in California?

Hi @mommiesboy1,

If you would like to make an appointment at Mayo Clinic, please call one of our appointment offices. You can also request an appointment online. The contact information for Minnesota, Arizona and Florida can be found here: http://www.mayoclinic.org/appointments
Mayo Clinic representatives will ask questions to help direct you to the best specialist, either at Mayo or closer to home.

As a parent, I can imagine how worried you must be, and we’re so glad you’ve joined this group. I’d encourage you to view this webinar, where Dr. Joseph Dearani, Mayo Clinic cardiac surgeon, talks about pediatric congenital heart disorders: https://connect.mayoclinic.org/webinar/askthemayomom-about-congenital-heart-disease-and-pediatric-heart-transplants-1/

You may also wish to view this Mayo Clinic webpage, and read some of the younger HCM patient stories:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/care-at-mayo-clinic/mac-20350208

Thank you

My 38 year old nephew was just diagnosed with CHM. He was a big athlete in college and had no symptoms but after some dizziness was diagnosed in mpls. He was seen by Mayo Rochester and now has a loop placed just under skin in chest to record his heart night and day to know heart function. If your son diagnosed early it is a blessing as much more dangerous if never diagnosed. So much new technology now it is a special dept at Mayo

@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.

Oh I’m sorry I meant this as response to @mommiesboy1