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Amy N. Find out more about Amy N.
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  • Amy N.
    replied
    Thanks guys. Some days/weeks I tend to worry a little bit more than others.

    Amy N.

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  • Sarah
    replied
    individualistic

    Dear Amy,

    Each case of HCM needs to be treated on its own --with an eye out for best practices and most successful treatments.

    There is no point in worrying about this age or that age---since your child was diagnosed so young, you need to have follow ups in a timely manner, but one year is about average for echos unless you see a change. I did, however, have cardiac check ups with ecgs every 6 months in high school and you may feel that every 6 months for at least a peek at a doctor is a good thing, too.

    Are you seeing a specialist? That is the most important thing to do.

    Your child's HCM will grow as he grows, but when or at what rate is up to him and not to any statistics. So annual echos will track that.

    take care,

    S

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  • Reenie
    replied
    Amy,

    I'm not sure, but I believe the growth around puberty is usually due to the changes in all of the body systems at that time. When the hormones start to kick in there are so many things that change, don't we all know, and of course the rapid growth is just one of those changes. I think it's attributed more to the extra rapid growth and hormone changes at that time. If not, can someone else please clear this up?

    Thanks,
    Reenie

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  • Amy N.
    replied
    I guess I forgot to mention in the first post that my son has already been found to have hypertrophy; therefore at 18 months had HCM. I just hadn't heard of anyone every saying anything about hypertrophy increasing at age 5, I had always read that the increase occurs around the teen years.

    Is the growth associated with increase in hypertrophy associated with puberty or just growth in general or is there even an anwer to this? My son is big for his age. In the back of my mind I wonder if this isn't the reason the hypertrophy has shown up now.

    Thanks - I'm still trying to learn all that I can.

    Amy N.

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  • Sarah
    replied
    year is ok

    Unless there are symptoms, every year is right for a kid whose last echo was normal.

    take care,

    S

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  • Cynaburst
    replied
    I will tell you what my pediatric cardiologist told me

    Hi Amy,

    I am the mother of a 15 mo. old son, and both my father and I have HCM. I just got an echo done on my son by a pediatric cardiologist who is one of the advisors of the HCMA.

    He told me that we could do an echo on my son now to have a baseline, but that we don't have to do another one until he is 6 because it is very, very unlikely that anything would show up before then. HCM is most likely to present at adolescence, so echos before then are really optional.

    I think alot depends on what the trend seems to be like in your family. My family seems to present at adulthood. If your family has had anyone who showed signs in early childhood, then echos more often would be prudent. If that is not the case, then it is really up to you.

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  • Amy N.
    started a topic Conversation with Nurse

    Conversation with Nurse

    Last week I called the pediatric cardiologists office to make sure that my son's doctor had received info from my cardiologist about the diagnosis of myself and my dad with HCM. I wanted to see if that would change when we would want to see my son again. We're not supposed to go back for a year which would be in September. The nurse said that normally they don't see much change in kids his age (2), but sometimes around age 5. This was the first I'd heard that. Is there any truth to that?

    Amy N.
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