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After 3 years still confused!!!!!!!!!!!


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Amy Find out more about Amy
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  • After 3 years still confused!!!!!!!!!!!

    Hi, I have been reading the posts and decided to join in. Three yrs ago my spouse was told he has ihss (i know its not called that now) anyway all doctors have told me different things about having my children tested. The first (family dr) said have them screened if nothing shows they are out of the woods,well they were negative at the time age 6 and 12 I was so relieved .Then through studying up I found out it can show up later in life.So in 2000 they were both screened again my a dr. who specializes in this field still both negative.The dr told me to have the younger one screened again in 2 years and the oldest when she turns 18 and then she will never have to be screened again. I said WAIT I thought this can show up later in life and he said it could but they know what they are looking for and if she is still negative by then she will not have it. Well this year my son goes back but I want to take my daughter to (both are really into sports) I know they will do the echo and ekg if I request but my question is AM I BEING A WORRY-WART or what should I do Please e-mail me [email protected] Thanks and God bless all of you

  • #2

    Dear Amy,

    It is fantastic that both the kids are clear. Every family is different and it is still unusual for HCM to show up later in life (albeit possible).

    However, the guidelines are pretty much this: every year for kids up to age 20 and every two years till 30 and every 5 years after that.

    Statistically speaking, if they are clear through to their 20s, they probably are clear for life ----but you just want to be safe. Most HCM "appears" in the early-mid teens.

    Call the office to get the names of specialists (973-983-7429).

    take care,



    • #3

      You certainly aren't being a worry wart. I agree with you, that you can't ever be too cautious with your kids. Sarah is right, they should be checked more often than every 5-10 years. It can show up later, and even if it's a slight chance, wouldn't you want to know for sure? Just my two cents.


      Husband has HCM.
      3 kids - ages 23, 21, & 19. All presently clear of HCM.


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