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my kid...defib.

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Starman Find out more about Starman
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  • my kid...defib.

    Hello...
    I post quite awhile ago about my son having some learning problems in school, etc.

    Now after his Holter Monitor and the recommendations of his primary cardiologist and two electrophysiologists (sp?) he needs an defibulator implant.

    My son (18) is going through some denial, so am I. I am divorced and my son is living with me.

    Are there any thoughts out there? Any comments? Suggestions would be very much appreciated.

    Sincerely,

  • #2
    Re: my kid...defib.

    Hi there. I understand the denial, but if your cardiologist recommends the defibrillator based on the holter monitor, do it. You might find that you deny the condition to the point that he has a sudden death incident. You surely wouldn't want that. If he has the ICD then he's protected as much as possible.

    Reenie
    Reenie

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

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    • #3
      Re: my kid...defib.

      hi i did the denial thing my self for two years and just did not beleve i needed it until that one day. so if the dr. sed it is needed i would do it and he will be protected in the long run he is very young and after time it will give him and you peace of mind somethings you hear will scare you but everybody is different good luck
      good heath to all

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      • #4
        Re: my kid...defib.

        Thank you, both.

        I do think my son needs this. I think my son is much braver than I am.

        For years and years When I see him in the morning, I know he made it. Know what I mean? Cell phone calls just to know he is okay.

        He says some things sometimes...."Dad I want to live for today", thus it seems not for the future.

        I love this kid so much....

        Thanks,
        Starman

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        • #5
          Re: my kid...defib.

          I'm glad to hear that he's living for today. We will do just about anything for our kids, won't we? I hope that both of you can learn and live with HCM. Let him know that if he has questions we will be happy to try to answer them for him.

          Reenie
          Reenie

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

          Comment


          • #6
            Re: my kid...defib.

            Reenie:
            Yes We will do anything for our kids.
            I need to get my son to log on. But I suspect, little chance of that.

            He was born with HCM so it has been a long haul...one step at a time.

            We have been living with this as best we can.

            Thank you VERY much for your response.

            Sincerely,
            Starman

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            • #7
              Re: my kid...defib.

              Hi Starman,
              If you don’t mind I’d like to throw a couple of pennies into this conversation also.

              First penny – I know just how you feel about your kids. My fervent prayer, if somebody harmed mine, was that they got caught and beat the rap on a technicality. That way I could introduce them personally to Jimmy Hoffa.

              Second penny – We all have HCM from birth since it is a genetic disease, and we have yet to learn how to change the gene make-up of a living creature. Of course symptoms can stay hidden for many years, or can present immediately. That’s why they advocate annual testing for children and teens of a parent who has been diagnosed with it. Among other problems I have been living with this disease for seventy-two years now, and have no plans on going anyplace soon. The way life expectancy keeps getting pushed back, I see no reason why your son can’t exceed that mark by a wide margin. I would expect him to.

              Take care – things do have a way of working out in this world. Just try your best.
              Burt

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              • #8
                Re: my kid...defib.

                Starman, you are very welcome. We're here for you any time you need us.

                Reenie
                Reenie

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

                Comment


                • #9
                  Re: my kid...defib.

                  Starman, I know what you're saying when you say we'll do just about anything for our kids. I also know what it's like to have a kid in what may seem to be denial. If he's had you to take care of all the HCM stuff to this point, he hasn't really had to and the whole thing has been fairly easy to avoid, and not truly deny. Does he take care of himself as he should - stay well hydrated, take his meds, know when to ask for help, etc? Can he call his condition and doctor by name and tell names and doses of his meds? If he's responsible about those things, he hasn't denied it completely. It just may be the best way he has of dealing with it now. He's 18, so he's reaching a new phase. Depending on his plans for the near future, he may need to become more independent very quickly. Will he still be on your insurance for health coverage, or will he become responsible for that himself? He's old enough to understand the concept of money and bills and the advantage of getting the ICD when the financial coverage is there. The last thing I've ever wanted my child to worry about was whether he would have the money for his meds or care, but it's a very real aspect and may be the topic you can break thru to him with. You're obviously very close and would know if you want to approach this topic. If it opens the door to a mature conversation and he feels you really see him as an adult now, it might help. If it causes more reason for worry and fear, then as a parent, I wouldn't want to go there. I'd want to protect my child. As a parent, you have that choice. We also have a responsibility to prepare our children for life on their own. Now here is where Lisa would insert those rolling eyes at me - so, enough of my rambling. I'm not offering advice on this one, just some thoughts. Whatever works for that paticular time and gets you thru that rough patch is OK in my book. Please keep us posted, best wishes, Linda

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                  • #10
                    Re: my kid...defib.

                    Everyone....sincerely,
                    Thank you very much.

                    Everyone said so much here. Not one bit of rambling.

                    Right now, I am hitting the sack.


                    Starman

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                    • #11
                      Re: my kid...defib.

                      Hi!

                      when we ha to decide about the AICD for our son
                      We wanted to learn not only about the physical issues, but also about the mental and inner-personal.
                      That is how we founded a video tape were young and teens talk about their aicd personal experince.
                      for more details - you are welcome to write to me.
                      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.

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