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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?

REPLY

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.

Liked by mommiesboy1

@falconfly

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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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

Liked by mommiesboy1

@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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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.

@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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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

@kanaazpereira

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

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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

@kanaazpereira

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

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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

@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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