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Kids getting screened

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Largehearted I miss living in Europe, specifically Munich, GermanyI like to think out loud. Some of my ruminations can be found at beinganddoing.wordpress.com. I love to cook and eat, but hate to clean up. I tend to be confident in my opinions, but will change when presented with a compelling enough reason/argument. Find out more about Largehearted
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  • Kids getting screened

    Hi everyone.

    Tomorrow will be the second screening for my kids. They are 8 and 10. My daughter is just entering puberty and does not do well in gym. She is clearly worried. The other night she asked me, "Dad. What if I inherited your heart and first mom's cancer?" Her birth mom died of lung cancer when she was 4. But it really tore at my heart to hear her wondering about her own mortality at 10. Kids should be bopping about and having fun in life, not getting worried about dying.

    Anyway we will go to this screening and see what we learn. One way or the other my wife and I will need to provide the kids with a sense of security that comes from a deeper place than not having things go wrong.

    Thanks for letting me ramble.

    Peace,

    Leon
    God Squad co-moderator
    Nothing is as gentle as strength and nothing is as strong as gentleness

  • #2
    Leon, How hard that must be. You always hold us all in your prayers and good thoughts. This time it's your turn--you have my best wishes for your children's health, but also very importantly navigating supporting them and helping them understand whatever the tests show. My best wishes, Lisa Inman

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    • #3
      Leon,

      Thoughts and prayers that the news will reveal another clear screening for your children. May the strength , wisdom and the support that you offer so many others return to you as you guide your children through the process, and you and your wife await the results.

      Pam
      Dx @ 47 with HOCM & HF:11/00
      Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
      Lead failure,replaced 12/06.
      SF lead recall:07,extracted leads and new device 2012
      [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
      Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
      Genetic mutation 4/09, mother(d), brother, son, gene+
      Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

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      • #4
        Leon, I share your worries as I have the same ones about my own children, some of whom don't do well in gym either. I'll just pray that yours are free for the time being. I also pray for peace for your daughter.

        Reenie
        Reenie

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

        Comment


        • #5
          GREAT NEWS!

          The kids are clear this time around! However the pediatric cardiologist did suggest a 3 year wait before the next screening. Don't we want to do it more often than that? I challenged him and he said he would look into it, but who knows what he will say?

          Anyway thanks for all your thoughts and prayers and join me in the happy news!

          Peace,

          Leon
          God Squad co-moderator
          Nothing is as gentle as strength and nothing is as strong as gentleness

          Comment


          • #6
            Leon that is sooo Great!!!!!!!!! now you can breath again

            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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            • #7
              Dear Leon,

              I've been offline for a few days, so did not know of your daughter's tests and her fears. In spite of not knowing in advance, let me say how thankful that I am that she is clear for now!

              Rhoda

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              • #8
                Great news!! Congrats.

                And yes, for kids, it should be 12-18 months tops between echos. they grow so fast!

                S

                Comment


                • #9
                  Test yearly!

                  My children were at the ages of 4 and 6 when I started having them tested. Their father, uncle and grandfather all have this disease. They have been tested every year. My son is now 12 and grew about 6 inches this last year and was just diagnosed. It does seem to show up more during growth. I personally would insist on having them checked every year. They are coming into the ages where they will be growing alot and just for your peace of mind. You have already been through so much I would not risk anything. If I they had told me last year when James was okay to wait 3 years, he would have been at extreme risk for sudden death for 3 years. Now, we know he has it and he has already had a defibulator put in.

                  I don't believe the insurance would give you a hard time about paying it. I would just be safe. I cannot be too careful when it comes to your kids and especially with a disease that is known to cause sudden death in young people.

                  Good luck. I pray they will continue to have good reports! Janet
                  My son James, Age 18, diagnosed in January, 05. AICD - 4/5/05 at Tufts NEMC. Myectomy -1/25/06 at NEMC. Currently having heart failure issues. James' father and uncle both have HCM and AICDs. James dad, Carlton, had Myectomy at Cleveland on 4/10/06. James Medtronic recalled lead fractured 5/26/11. Had Biventricular Cardiac Resynchronization AICD put in on 6/3/11 Emory Midtown.

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