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3 children /yearly echos

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  • 3 children /yearly echos

    Hello ;

    I'm glad to say that my 3 children (ages 6,9,11) had their yearly echo this week and everything is normal. I'm not one to come unglued, but ,I hate the anticipation every year. Both my pediatrician and Pediatric cardiologist are very proactive, which is terrific. The kids understand the situation and are great participants . They love watching each others hearts. My 6 year old always wants to know why his heart doesn't look like a valentine!!

    I was not diagnosed until age 36, when I experienced several episodes of syncope.(a sporatic case..no one in my family has been diagnosd other than me) Now I have an ICD and more recently a replacement that included a dual chamber pacemaker. I am followed by Dr. Lever in addition to Drs. in Buffalo.

    Lisa: My pediatric cardiologist was a fellow with Barry Maron (small world!)
    Dr. Pieroni.

    I was asked by another pediatric cardiologist if we had undergone any molecular testing. What benefit would molecular testing have? Where can this testing be done?

    Thanks!


  • #2
    Re: 3 children /yearly echos

    Hi,

    I've never heard of molecular testing unless the doctor means genetic testing. THere is no standard genetic test for HCM.

    However, there is a group that is doing genetic sequencing of HCM families and you can e-mail Lisa requesting information about this. THere is no guarantee of results and it may take several years to get any answer at all.

    Take care,

    S

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    • #3
      Re: 3 children /yearly echos

      Hi!

      There are some benefits of doing a genetic study: (screening your family by doing blood tests and echo to all the members of the family, including grandparents and uncles etc...) .
      1) Helping to plan the family in the future.
      2) knowing the prognosis and decide about the treatment of your HCM
      3) helping the medicine to know more and better HCM
      It may be scary - but I think it is important and the responsible thing to do.
      Wishes for healh, peace and love!

      Daniela E-H, Mother to Matan-Ben (13 years old) who had his AICD implantation (29/03/04) and Myectomy (14/12/08) and Noga (4 years old) not affected
      Haifa - Israel.

      Comment


      • #4
        Re: 3 children /yearly echos

        Originally posted by Danielaeh
        Hi!

        There are some benefits of doing a genetic study: (screening your family by doing blood tests and echo to all the members of the family, including grandparents and uncles etc...) .
        1) Helping to plan the family in the future.
        2) knowing the prognosis and decide about the treatment of your HCM
        3) helping the medicine to know more and better HCM
        It may be scary - but I think it is important and the responsible thing to do.
        I wanted to comment on this posting - I strongly agree that genetic screening is valuable. The reasons stated may not be realistic at this time.
        Yes you can use the information to plan you family.
        NO you can not use the information to know the prognosis and treatments. We know some of the genes that cause HCM - however we do not know what they mean - In some cases you may have a gene that has been linked to "good outcome" or "benign" - however YOUR family has a number of sudden deaths and many who are symptomatic - we just do not know enough YET.
        YES being geneticly tested will help our understanding of the diesease and can help countless others in years to come.

        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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        • #5
          Re: 3 children /yearly echos

          Hi, I am so happy that your kids got a clear bill of heath this time. I also hope they stay clear.

          I am going through the same thing. My kids need to get echos next month. This is the second time for our kids. We have only know about this for about 16 months. Wish us luck also.
          Donna B. HCM & ICD. 2 sons with HCM. Brother passed away from HCM at the age of 39. Mother has HCM.

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          • #6
            Re: 3 children /yearly echos

            Donna,

            Good thoughts and wishing are heading your way. Let us know how things go.

            Wonderly.......Yeah!!!!!!!!!!!!!!!!!

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