Screening children for HCM

[mimoo55]

Hello,
I am new here and have a question about children being screened for hcm. My husband was diagnosed with HOCM last year. Our daughters are ages 28 and 30. They have been screened for hcm and do not have it. We have been told different opinions about whether it will show up later in life. They both have been told that if they don't have it now that they are o.k. for the rest of their lives. My husband's dr. says that is not accurate and they need to be screened for the rest of their lives. Can anyone answer this question for me?

Thanks,
Paula

[felixdacat]

Re: Screening children for HCM

They're going to need to be checked for the rest of their lives. HCM in many cases does not 'express' itself till later in life. 5 years ago, my heart was normal, 4 years ago they discovered HCM, 2 years ago I became symtomatic, and 6 months ago they added 'obstructional' to the diagnosis.
I believe there are guidlines somewhere on this website, but they only need to have echos done every few years (and the technicians must be instructed to look for HCM).
How is your husband doing with his HOCM? Anybody who has that 'O' in their diagnosis should give Lisa a call.

[mimoo55]

Re: Screening children for HCM

Hey Felix,

My husband is doing fairly well. He had septal alcohol ablation last November. He had heart block and had to have a pacer implanted. He had a follow up stress echo yesterday in St. Louis. His dr. was out of town and will give us a call. Another dr. was in while the test was done and said the procedure had done well. His stressed gradient was minimal. His mitral valve was not being pulled on or rubbed against anymore. His symptoms have been relieved. His main complaint now is fatigue. He also saw the ep dr. and had his pacer reprogrammed. Do you have hcm?
Thanks,
Paula

[mimoo55]

Re: Screening children for HCM

Hey Felix,

I see that you have HOCM. How are you doing?

Paula

[felixdacat]

Re: Screening children for HCM

Paula,
There is a long thread in the Septal reduction section about my recent myectomy. Today is a good day. Its way too soon to tell if the surgery was successful, but all signs point to a good result.
One more thing.
If they could isolate all the genetic markers for HCM, there would be a possibility of a test that could tell once and for all whether a person could get it. Since they have only found roughly 10 markers, we are still have a long way to go.
A good guess would be 5-20 years down the road.

[Sarah]

Re: Screening children for HCM

the old thinking was that it only showed up when you were young but in the last few years they've been finding a lot of it in older people.

the odds are against your children having it show up later, but it is possible. they only need to be tested every 5 years instead of the annual echo they would expect of a growing child/teen. they shouldn't over worry.

so they are pretty close to being out of the woods.

s

[mimoo55]

Re: Screening children for HCM

Hi S,

Thank you for information. We have grandchildren that need screening. We have a 1 month old granddaughter that has had a suspicious ekg and is scheduled for another one next month. Does she need to have an echo?

Paula

[Reenie]

Re: Screening children for HCM

Paula, I would get her screened. An abnormal EKG on an infant may or may not mean anything. You'd feel better if you knew what was going on.

Reenie

[Sarah]

Re: Screening children for HCM

An echo is the only way to know if you have HCM or not. Especially with a suspicious ecg--if they don't offer an echo, get an echo.

good luck,
s

[Lisa Salberg]

Re: Screening children for HCM

In several weeks there will be new article published listing the screening guidelines that are recommended in hypertrophic cardiomyopathy. They are is followed:
from birth to age 12-
if there is a significant family history of sudden death or severe symptoms
participation in competitive athletics
heart murmur
any symptoms consistent with HCM.

From ages 12 to 20-
annual screenings

From 20 throughout life-
every five years.

We will be announcing the article in our newsletter when it is published.

Sincerely,
Lisa

[djs]

Re: Screening children for HCM

I've glanced through the archives and can't get a solid answer to the question of how to screen children.

Specifically, for my 4 month old baby girl, is an EKG sufficient for screening or does she need an echo also? (NOTE: She's not showing any symptoms that I can discern, we're just doing this to get her started on a regular screening routine.).

I was under the impression that an echo was the only way to know for sure about hcm/hocm. However, the pediatric cardiologist that my pediatrician consulted said to do an electrocardiogram. Our pediatrician is very supportive and I'd bet that she'd do a referral for an echo + ekg if I asked her. On the other hand, I don't want the baby going through unnecessary testing. We have her 4 month check-up tomorrow so I'd like to request the echo referral then if necessary.

So, to be concise, I need the collective HCMA wisdom on how to screen an infant. Are there any published guidelines on screening infants for HCM?

[Burton Borrok]

Re: Screening children for HCM

Hi DJS,
Check out Lisa’s posting – just before yours. Also, if you’re concerned about it, an echo is a non-invasive procedure and will not harm the baby. It may however set a lot of minds at rest.
Burt

[djs]

Re: Screening children for HCM

Hi DJS,
Check out Lisa’s posting – just before yours. Also, if you’re concerned about it, an echo is a non-invasive procedure and will not harm the baby. It may however set a lot of minds at rest.
Burt

But it doesn't say what the screening should consist of.

[Reenie]

Re: Screening children for HCM

Usual screenings are echos and EKG's. I'm not sure, but I think it's unusual to screen an infant unless you have some reason to suspect a problem. (heart murmur, etc) I don't blame you for wanting to know what's going on in there though. I've had my kids tested 3 times in almost 4 years. The youngest was 4 at the time of his first screening. Each time they do an echo and an EKG. So far all of my kids have come up negative for HCM. I hope this helps.

Reenie

[Abbygirl2]

Re: Screening children for HCM

My son had an ekg( a few) when he was born, and then at 2yrs old they did an echo, it was inconclusive so they did it again at 3. He checked out fine and my Dr said he wouldn't need one for 5 more yrs(unless something comes up). I would have requested one if my Dr hadn't, I NEEDED to know my little guy was alright. My 12 yr old had one 2 yrs ago and I am trying to get him in for another one.

Pam