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Genetic and nonGenetic Testing for Kids

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Colorado213 Wife to husband diagnosed with "a severe case of HOCM" according to Dr. Salcedo at University Colorado Med Hospital HCM Center March to June 2014 I'm the main researcher and planner, so here I am! Mother to 3 young boys who will be tested in the coming months as soon as we get daddy situated. Find out more about Colorado213
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  • Genetic and nonGenetic Testing for Kids

    My husband has HOCM, and we are still awaiting results from his genetic testing. But we are wondering about testing our three boys (11, 8, 6).

    Would echos yearly or twice yearly be enough to screen them? When did you start?

    Have you had your kids genetically tested?

    I have several concerns with testing (in jump-to-my-mind-order):
    1)their ability to obtain life insurance as an adult if they test positive (thank goodness my husband already had it through work)

    2) Unnecessary restrictions if they test positive but never have symptoms.

    3) If we only use echos, how at-risk are they between tests? Even without heart growth (to be considered HCM) on a cellular level are they at risk for SCD or is that only once the heart starts to thicken?
    Megan, wife to Husband, Justin with HOCM
    Husband diagnosed at 37 when taken to ER due to CHF on vacation in San Diego at Pomerado Hospital, March 2014
    Seeing Dr. Salcedo in UC Med Hospital Denver upon diagnosis
    AICD/Pacemaker July 2014 @ UC Med Hospital, Denver with Dr. Nguyen
    Myectomy at Cleveland Clinic October 2014 with Dr. Smedira
    Parents to 3 boys, 11, 8, and 6 all currently clear from recent echos

  • #2
    Re: Genetic and nonGenetic Testing for Kids

    As with HCM, there are no clear-cut right & wrong answers. Generally, Echos are yearly until adulthood, then every 5 years unless symptoms arise. You can start now, there is no general age to begin testing. Once your Husband has the genetic results, they can then test the kids as they'll know what to look for. As to testing positive/insurance. This is a sticky wicket. While some recent laws protect and the Affordable Insurance Act also has some protection, Insurance companies can deny and come up with some other reason. If it were me, I'd have them tested regardless. Once they do get employment, have them keep the policies issued at work. They are often portable (and no one asks that!) As to restrictions (and BTW, excellent questions) most folks tend to just have kids lean towards less active sports.
    And as to risk - we can't go through life fearing something so remote and rare. The percentage of SCD is extremely low. If your child presents markers/symptoms for HCM, then the prudent thing is to begin to limit risky activities. But if there is no family history, or symptoms, then one must make a personal decision as to how much to limit. Your doctor can advise as to how to proceed.
    Typically with kids, the pros tend to be hyper-vigilant during puberty and those major growing spurts during the teen years. No one can say when or if such things can happen. it could happen walking out of an echo! but again, the chances are rare.
    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: Genetic and nonGenetic Testing for Kids

      All of the concerns that you raise are legitimate. The Genetic Non-Discrimination Act does not apply to the issuance of life insurance - only health insurance and employment. If your husband's HCM gene is identified and the kids are then tested and found to be negative for the gene, then they do not have to undergo further serial screenings. For those that test gene positive, or for those whose genetic status is unknown, the normal recommendation is to screen by cardiac exam and echo every 12 - 18 months beginning at puberty or about age 12. If symptoms develop in between, then obviously you should go right back in, even if it has not been a year.

      I started screening my own son in utero, and have screened every year to date. He is now 12 and will be screened every year through adulthood.

      As for limitations, unless a child has a diagnosis, there are no restrictions, even for gene positive kids. Obviously there are no guarantees in this sort of thing, so there is no absolute way to protect yourself from SCD, between screenings. However, the hope is that the child will show some signs of HCM and be properly protected in hopes of avoiding the worst case scenario.

      I just try to be prudent with my own child. He actually has self selected activities other than competitive sports, and that is what is encouraged for HCM kids (even though my son is currently not one). As a parent you can only protect your children so much, and then you have to let them live their lives.
      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: Genetic and nonGenetic Testing for Kids

        ..........
        Last edited by NDFAN; 06-17-2014, 11:18 PM.

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        • #5
          Re: Genetic and nonGenetic Testing for Kids

          My son & I both have HCM. My son & daughter-in-law have 5 children under 14 yrs of age. Last week we went to Hopkins for genetic testing. Assuming we get conclusive results, the doctor advised my son and his wife to consider purchasing life insurance for each of their children before having them tested.

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          • #6
            Re: Genetic and nonGenetic Testing for Kids

            Jublilee1972 - this is a good idea if possible as its difficult to get once a DX has happened. Also - a reminder that many employers policies are transferable so if you leave a firm where you have a policy, inquire if its portable.
            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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