[Age To Start Screen]

Author: Karin (206.219.255.---)

Date: 12-30-02 12:54

Hello All -

This post is for Lisa (I have an update and some questions for you on another issue if you want to speak privately over e-mail) or whomever wants to answer it.

My 27 year old husband died last year and I found out that it was sudden cardiac death due to HCM.

He has 5 brothers and a sister, and several nieces and nephews who range in age from 2 to 23.

Most of his siblings have undergone the echo, heart monitor, and stress test already. At what age should the rest of the nieces and nephews go to be screened for this condition?

(I speak specifically about my younger nieces and nephews, i.e. the 2 year olds and 4 year old.)

Any thoughts?

Thanks for your help!

Karin

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[Re: Age To Start Screen]

Author: Sarah B--Board Moderator (---.client.attbi.com)

Date: 12-30-02 17:34

Dear Karin,

If one of their parent's have it, then they should start getting screened right away. If the parent's don't have it, then they still need to be screened, but it isn't urgent.

All kids at risk should get screened every year.

Take care,

S

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[Re: Age To Start Screen]

Author: Karin (206.219.255.---)

Date: 12-31-02 10:35

Thanks for the information...however, is there any particular age at which to being screening? (at present none of the parents have been diagnosed, my husband was the one who died of it, and we didn't get a chance to have children yet).

These are my nieces and nephews, who we'd all like to get screened.

Thanks again,

Karin

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[Re: Age To Start Screen]

Author: Sarah B. Board Moderator (12.144.99.---)

Date: 12-31-02 11:11

Dear Karin,

If their parent's are clear, it is very, very, very unlikely that the kids have it. However, it has happened, so they should be screened. I know that whatever age I put out of my hat, Lisa will probably have a different answer. I'm going with age 12 to start --please note, other posters, that this is for kids whose parent's are clear! If a parent turns up with HCM at any point, all bets are off.

Lisa?

S

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[Re: Age To Start Screen]

Author: Brian (---.merck.com)

Date: 01-02-03 09:08

My son's doctor recommended that he be checked out by a Cardiologist at age 3. Due to me having HCM. I would just like to tell everyone that he checked out perfectly fine, but they do want to do the checkup again in 5yrs because it can come in as late as puberty.

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[Re: Age To Start Screen]

Author: Reenie (---.snbrca.adelphia.net)

Date: 01-02-03 09:37

Brian, I'm not sure which doc. you see, but ours said our kids should be checked every 3-5 years. Since then I've heard that 18 months to 2 years is better for smaller kids. Please check to be sure you don't wait too long. When they are growing, things change very quickly.

Reenie

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[Re: Age To Start Screen]

Author: Sarah B. Board Moderator (12.144.99.---)

Date: 01-02-03 10:19

Hey guys,

Just to clarify....

The general guidelines for screening when your parent HAS HCM are 1-2 years until you are 30 and then every 3-5 years after that. This is assuming no HCM appears since if HCM shows up, then echos will be scheduled as needed, but no less than every 2-3 years.

The orginal question was for kids whose parents are still screening CLEAR. If the parents are clear, it is super unlikely the kids will ever get it, so they need to be screened --as do the parents--on a regular basis, but it doesn't have to start so young and it doesn't have to be so often as they are LESS at risk than the parent(s) who have a "first degree" risk (my term) and their screening needs to be kept up more strenously.

S