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my son had an echo recently....

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  • my son had an echo recently....

    My 8 yr. old son had an echo done in August. No signs of HCM. His pediatrician decided to take one after I had told him that I have HCM>
    He was o.k.....but as we all know, it could show up in the future. Do you think he should have an echo done once a year or wait until he is older?
    \"It is not length of life, but depth of life.\"

    Ralph Waldo Emerson

  • #2
    every year

    Dear Cynthia,

    Whenever a parent has confirmed HCM, most doctors recommend that you get an echo for each child every year till 20, then every 2 years, then every 5 to 10 years after that. The odds are that your child would show HCM in the early teens ---if they were going to get it. However, there have been a few cases of late onset, so better safe than sorry.

    Kids grow quickly, especially boys, so every year till 20 is your best bet.

    Take care,

    S

    Comment


    • #3
      Hi Sarah -

      Does this hold true of siblings with HOCM? Keanu's two sisters are showing no signs so far. They both had echols in August of 2001 and were cleared.

      Thanks,
      Mom of Keanu
      4 years old (will be in March)
      Dx at 2 days old with Biventricular hypertrophy
      Dx at 6 weeks with HOCM
      Dx at 5 months with V-tach
      Dx at 3 with Noonan Syndrome

      Comment


      • #4
        anybody

        Hi,

        Anyone who has one parent (or more) with HCM/HOCM should get an echo every year, regardless of the echo results.

        S

        Comment


        • #5
          It's me again.... Sorry to bug... I understand children of parents with HCM should be checked, but neither myself nor my husband have it. My son is the first that we know of to have this. That's why I was unsure about how frequent the siblings should be echoed. Thanks for the clarification.
          Mom of Keanu
          4 years old (will be in March)
          Dx at 2 days old with Biventricular hypertrophy
          Dx at 6 weeks with HOCM
          Dx at 5 months with V-tach
          Dx at 3 with Noonan Syndrome

          Comment


          • #6
            SheliRenee,

            I would ask the doctor about that. I would think that it's the same guidelines, assuming that the HCM is the routine genetic type. There are syndromes that can have HCM as a "side effect", although I'm not sure that's the right way to word it. Lisa or some others can fill you in more on that. Anyway, if he doesn't have any of the other syndromes, I would think that the girls should be tested every two years until about 10 years old, then yearly through teens, I think. But always confirm this with the doc. By the way, how did his holter go?

            Reenie
            Reenie

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

            Comment


            • #7
              Hi Reenie -

              I really hate having to put Keanu on the holter. It's very difficult to keep a 23-month old from pulling the leads off. It was much easier as a newborn. Anyway, he was in his room for about 20 minutes by himself, playing with his toys and watching/listening to a Blue's Clues video. When he walked out into the family room I noticed that all the wires that I had threaded through his clothes, trying to keep them out of his way, were no longer visible. He got every last lead off. I ended up taking him back up the the Heart Institute in Loma Linda and the nurse put a whole new unit on. We had to start the whole 24 hours all over again. The nurse taped those leads on with quite a bit of tape. He never got them off, but I don't know how hard he tried. He is scheduled for his echo on the 4th of March at 8:00a.m. As soon as it is completed, we get to go visit with the doctor and he'll go over the holter and echo findings at that time. So, to make a long story short (too late - ha ha), I don't know yet. Hopefully we get a good report. I'm actually a bit anxious.
              Mom of Keanu
              4 years old (will be in March)
              Dx at 2 days old with Biventricular hypertrophy
              Dx at 6 weeks with HOCM
              Dx at 5 months with V-tach
              Dx at 3 with Noonan Syndrome

              Comment


              • #8
                I'll be thinking of you guys. Good luck with keeping him still for the echo. By the way, in my post above, I said they should be screened yearly through the teens. I should've continued to say what Sarah said, about being screened throughout their lives since some people do show HCM as an adult. Sorry if I confused anyone.

                Reenie
                Reenie

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

                Comment


                • #9
                  Curious

                  There aren't too many people in your situation. I'm not sure if there are any specific guidelines.

                  However, if it were me, I would probably get the girls checked every _few_ years (3ish?) and get myself and my husband echos every 3-5 years, too.

                  Take care,

                  S

                  Comment


                  • #10
                    My concern is ....

                    I know that some types of HCM don't show up until later in life, but is there anything on the opposite? Where HCM shows up early in life (not metablic)? Like a lot of parents that have one child diagnosed at an early age (18 months), I wonder how often our other children should be checked. I just wondered if there was any info out there on children diagnosed young and what age siblings were diagnosed.

                    Of course I'm hoping my daughter's echo always show up clear, but I still have the worry in the back of my mind as to how often she should be checked. Does it matter that a silbing was diagnosed young when considering futher checks?

                    It's definately complicated and confusing when you have a little one diagnosed.

                    Amy N.

                    Comment


                    • #11
                      Hi Reenie -

                      Fortunately, I will not have to worry about keeping Keanu still for the echo. Because he has been getting the Synagis injections each month, he freaks out as soon as he sees the hospital or medical building....especially when we get to the exam room. This is on top of him being so young and unable to keep still. Consequently the doctor always orders sedated echos. I am so grateful for that... otherwise I don't know how we'd get his echos done.

                      SheliRenee
                      Mom of Keanu
                      4 years old (will be in March)
                      Dx at 2 days old with Biventricular hypertrophy
                      Dx at 6 weeks with HOCM
                      Dx at 5 months with V-tach
                      Dx at 3 with Noonan Syndrome

                      Comment

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