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Kelly&Bert Find out more about Kelly&Bert
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  • Very Confused...Please Help

    Hi everyone... My partner was diagnosed with HOCM three years ago and is waiting for a myectomy. We have a three year old daughter who was born with a heart murmur which went away around a month after she was born doctors have listened to her heart at her checkups and say everything sounds fine. My question is when should she be screened the cardiologist suggests when she is five unless she displays symptoms. However, my sister in laws children (she also has the condtion) arre not being screened until 11 or 12. I am so worried about my daughter...should i be letting her run around and jump about(may sound silly but Im so worried about SCD) I just dont know what she should be allowed to do... I know its a 50;50 chance or her having HCM but should I still play it safe and limit what she does...very difficult to do as anyone with a three year old will know

    Thank you in advance for any advice.

  • #2
    Hello Kelly & Bert,
    Welcome to the HCMA message board and site filled with great information to assist you in your search for answers. You can do a search on the site / board to find more detailed answers regarding screenings. It is usually acceptable to screen young children in a family with HCM starting around the age of 12. The reason for that seems to be that the start of HCM normally happens during the puberty years. Now that doesn't mean that children in a family with HCM should not be screened earlier...it only means that any earlier may not be practical. If a child is having symptoms or a heart murmur was detected an earlier screening has grounds for the doctors to get permission from the insurance companies.

    Of course, you are outside of the US and your medical system is quite different. I wish you luck and pray for your little girl that she will always remain HCM free. But as you know with her father, HCM is not a death sentence if found early and treated through an educated physician / physician group.

    Welcome!
    Sharon

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    • #3
      The HCM specialists we have here like to screen children every 12-18 months without any baseline age to start screening.

      The old belief is that kids didn't get it till their pre-teens or growth spurt, however, this is only a more common presentation and not a rule.

      Especially in the US, kids are getting bigger earlier and age is a smaller factor. I have a 13 year old cousin who is 5'11" and 200 lbs. He was being screened at 5 and yes, he has HCM, poor kid. Everyone assumes he plays football and he can't.

      If the children in question have a parent diagnosed with HCM, it is safest to screen as early and as often as your medical system will allow. My brother and I are on the scrawny side and he was diagnosed at 8 and they only screened him because I turned up with a murmur at 13 (and this was over 20 years ago).

      Screen like a Chicago voter: early and often!

      S

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      • #4
        What the doctors said at the annual meeting was that it is optional to screen before adolescence.
        Daughter of Father with HCM
        Diagnosed with HCM 1999.
        Full term pregnancy - Son born 11/01
        ICD implanted 2/03; generator replaced 2/2005 and 2/2012
        Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

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        • #5
          Originally posted by Cynaburst
          What the doctors said at the annual meeting was that it is optional to screen before adolescence.
          Sorry, I didn't get to finish that. It is optional unless there is some other reason to be worried, i.e. others in family have been diagnosed early or had sudden death before regular screening would begin, or if the child is showing signs and/or symptoms that might be HCM. Otherwise, annually after 10 or 11, until 20, and then every five years throughout life.
          Daughter of Father with HCM
          Diagnosed with HCM 1999.
          Full term pregnancy - Son born 11/01
          ICD implanted 2/03; generator replaced 2/2005 and 2/2012
          Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

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          • #6
            I bow to Cynaburt's most current info.

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            • #7
              Thank yoou for all your replies...it can be quite confusing when so many doctors all seem to have different opinions.

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