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My son and hcm

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Kathleen Shores Find out more about Kathleen Shores
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  • My son and hcm

    Good day to you all,
    My name is Kathleen I was diagnosed with HCM in 1999 at the age of 31.
    We had both of my sons tested for HCM after I was diagnosed. My son who was 5 at the time does in fact have the hcm and my 4 yr. old did not. My question is since finding my hcm and now having multiple arythmia's as well, should my youngest son who was 4 be tested again before he is 13? Since my youngest is 8 now, I wonder if waiting until he is 13 to me retested is too long. He has learning issues and I really question if he would be able to figure out that he really doesn't feel well on his own. He has never been the lilttle boy who loves to be outdoors; that ironically is my 9 yr. old who has the hcm. Any insight to any new tests that are out there and available would be appreciated.
    Thanks much.
    Kathleen
    Live in peace and peace will follow

  • #2
    Hi and welcome to the HCMA. If you have any questions about your son's health I think it would be a good idea to have him screened. I think they say to usually start annual screenings at about 10-12 years of age, but if your insurance will agree, you can do it annually now if you want to. My own kids were 4, 6, and 8 when my husband was diagnosed. They've been screened every year since. If your youngest is still clear right now, you can consider waiting another 2 years or so to screen him again if you feel comfortable with that. I hope to hear more from you when you're ready to share.

    Reenie
    Reenie

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

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    • #3
      Kathleen

      I would like to welcome you to the board and please feel free to ask all the questions you would like I'm sure someone will give you the answers you are seeking

      Shirley
      Diagnosed 2003
      Myectomy 2-23-2004
      Husband: Ken
      Son: John diagnosed 2004
      Daughter: Janet (free of HCM)

      Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

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      • #4
        Kathleen,
        I would suggest that your youngest be rescreened at approximately age 11 - or when it appears that puberty has begun. OR sooner if there are any signs or symptoms such as a murmur, shortness of breath or complaints of 'feeling his heart beat too hard' or the like.

        Please give the office a call next week - we will send you some more information on screenings.

        Best wishes,
        Lisa
        Knowledge is power ... Stay informed!
        YOU can make a difference - all you have to do is try!

        Dx age 12 current age 46 and counting!
        lost: 5 family members to HCM (SCD, Stroke, CHF)
        Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
        Therapy - ICD (implanted 97, 01, 04 and 11, medication
        Currently not obstructed
        Complications - unnecessary pacemaker and stroke (unrelated to each other)

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