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Why is screening recommended for 12 yrs old and up if younger children have HCM?

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  • Why is screening recommended for 12 yrs old and up if younger children have HCM?

    I am home recovering from a septal myectomy done May 8th. Most of my family members are now undergoing screening for themselves. One of my sons was diagnosed two weeks ago with obstructive HCM and is at Hopkins today undergoing further testing. I have 10 grandchildren who need to be screened but we were told only the ones 12 yrs and older. My 7 yr. old grandson says his heart hurts when he runs and so we've insisted that he get an echocardiogram. Now I'm reading about children younger than 12 needing a myectomy on this forum and wondering why the Docs only want to screen children that are at least 12 yrs old? Thanks!

  • #2
    Re: Why is screening recommended for 12 yrs old and up if younger children have HCM?

    There may be a misunderstanding. Any and all kids should be tested. IF they are negative, they should be tested yearly if there is a know presence of HCM in the family. This is especially true for kids going through puberty. Once they get adult they can go every 5 years unless symptoms change. My thinking is someone may have gotten this info incorrectly. Do call the doctor and confirm the testing requirements.
    Marc
    Diagnosed @ 48
    Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
    Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
    AICD - Valentines Day '08, Spark Plug replaced 11/14
    After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
    Quietly going insane . . .

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    • #3
      Re: Why is screening recommended for 12 yrs old and up if younger children have HCM?

      The recommendation is based on the fact that HCM most often develops at puberty. Screening before then is considered optional UNLESS A CHILD HAS SYMPTOMS. Then they should be seen right away. Also, if a child is known to be gene positive, or there is some particularly bad family history, more earlier screenings might be performed just to be safe.

      I have had my own son done every year since before birth due to my own paranoia.
      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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      • #4
        Re: Why is screening recommended for 12 yrs old and up if younger children have HCM?

        OK, this makes sense. I'm going to push to have all of my grandchildren screened Just to be safe. Thanks again.

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