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mommiesboy1
@mommiesboy1

Posts: 5
Joined: Jun 02, 2018

My 11 year old was diagnosed with HCM

Posted by @mommiesboy1, Sat, Jun 2 11:24am

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?

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falconfly
@falconfly

Posts: 34
Joined: Nov 23, 2016
Posted by @falconfly, Sat, Jun 2 1:35pm

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.

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mommiesboy1
@mommiesboy1

Posts: 5
Joined: Jun 02, 2018
Posted by @mommiesboy1, Sat, Jun 2 2:18pm

Thank you for the information.

Posted by @cynaburst, Sun, Jun 3 6:54pm

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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mommiesboy1
@mommiesboy1

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Joined: Jun 02, 2018
Posted by @mommiesboy1, Mon, Jun 4 10:43am

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.

mommiesboy1
@mommiesboy1

Posts: 5
Joined: Jun 02, 2018
Posted by @mommiesboy1, Mon, Jun 4 11:09am

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

Posted by @kanaazpereira, Tue, Jun 12 9:38am

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

mommiesboy1
@mommiesboy1

Posts: 5
Joined: Jun 02, 2018
Posted by @mommiesboy1, Tue, Jun 19 1:38am

Thank you

ccubed
@ccubed

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Joined: May 02, 2017
Posted by @ccubed, Tue, Jun 19 8:07am

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

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