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How young should children be tested for HCM?


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  • How young should children be tested for HCM?

    Sorry if this is on the board some where already. I am wondering how young should children be tested for HCM. I just became a grandfather. My son is 25 and his echo looks fine. I did the genetic testing, but they did not find the gene. My grand daughter's pediatrician is asking. I will also email Dr. Freeman at Mayo for advice on this.

    Thanks, Craig

  • #2
    Re: How young should children be tested for HCM?


    First of all, congratulations on becoming a grandfather! From watching my parents with my kids, I know that the grandparent/grandchild bond is really special.

    The guidelines for testing kids - as put out by the American College of Cardiology and American Heart Association - say to screen them annually (with an echo and EKG) starting at puberty (11-12 ish) till 18-20, then every 5 years unless symptoms appear. Now having said that, my kids were 9 and 6 when my husband was diagnosed and we brought them to be screened by a local cardiologist right away for peace of mind. He wanted to see them back in 3 years - so the oldest would be 12 and ready to start annual screening anyways, and the youngest 9 for another check. In the interim, we had the kids genetically tested and found out the oldest is gene positive so we started annual screenings right away and have decided for the time being to have the youngest - who is gene negative - checked from time to time to be on the safe side. So guidelines are really just that. If you or your son is at all concerned about the baby, and since there is the unknown as to whether your son has the gene that caused your HCM, there is no harm in bringing her for an echo. When my youngest was 3 months, the pediatrician detected a murmur (turned out to be "innocent" - quite common apparently) and we had to go for an echo and it was no problem whatsoever. No sedation or anything required in our case.

    Good luck, and enjoy that grandbaby!


    • #3
      Re: How young should children be tested for HCM?

      I have a very strong family history, so I started having my first screenings in utero with a fetal echo. After my son was born, I have had him looked at just about every year since birth. Since we have just begun puberty, we will continue annual screenings unless he has symptoms first, in which case I will bring him right in.

      I have to also say that if your grandchild is inclined to competitive sports, you should keep a closer eye. I have tried to encourage my child toward less sports activities and more things that he could continue if he ever got a diagnosis. That is one recommendation for children in HCM familes. He does drama, lego, computer games and filmmaking, art, etc.

      Congrats to you on your grandchild.
      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.


      • #4
        Re: How young should children be tested for HCM?

        We have a strong history of HCM too and I was given echo's every three years as I grew up. My boys are ages 8 and 10, and they started having echo's at a little over age one- due to family history, I had not yet been diagnosed with HCM then and did not even know my gene status, etc. Their echo's were every three years at the time, but then it was found I had the gene and was diagnosed with HCM and their screenings changed as well.

        We have had annual screenings on them in the last five years, this was recommended to me by an HCM specialist without knowing my boys' gene status at the time, because of our family history with HCM and my developing HCM as well. We are also encouraging our boys to do "safe" HCM sports, but they are allowed (per our HCM specialist) to play baseball (they do not have HCM), but we are encouraging other sports as well. My 10-year old just took up archery along with doing baseball and my youngest is really active in drama as well as doing baseball. He also wants to take guitar lessons. We've been really encouraging love for activities other than competitive sports because of the HCM and the high chance someday they will not be able to play competitive sports at all.
        Last edited by mandksiders; 01-04-2013, 10:47 AM.


        • #5
          Re: How young should children be tested for HCM?

          In case you wanted more stories . . . My kids are gene positive and 1 has 2 mutations so I am more comfortable getting them tested every 2-3 years even though their cardio dr says it's probably unnecessary. She requested that they have their 1st echo at age 3 (when they were able to lay still for awhile - during the echo they watch a movie). But she said that since their toddler echos are ok they could wait until puberty to get checked again.
          In short, my kids started echos at age 3 at their cardio dr's suggestion.
          Diagnosed during pregnancy age 30, July 2007
          2 mutated genes found in Feb 2009
          ICD Nov 12, 2009
          2 daughters born in '07 & '09. Normal EKGs.
          No known family history of HCM
          In 1995, at age 18, an echo for a misdiagnosed mvp showed HCM but it went unnoticed.
          Still jog and feel no symptoms on most days.


          • #6
            Re: How young should children be tested for HCM?

            It's so interesting the differing opinions of cardiologists. We go to Mayo and see an HCM specialist, both of my boys are gene positive and I was told by two HCM specialists there that they need annual echocardiograms, so we do them annually. They both actually said this before we even know their gene status, based on our family history. However, both of our boys do participate still in baseball, so that's a big reason for them to get checked yearly as well.


            • #7
              Re: How young should children be tested for HCM?

              Thanks for all the help. I will pass this on to my son and daughter in law.