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bryan Find out more about bryan
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  • For parents

    I was diagnosed at 3 weeks old so Ive known Ive had HCM my whole life. But I was wondering, as parents of children with HCM, even though there is really NO easy way, do you think it was easier dealing with the disease when the child was younger opposed to finding out when the child was a little more older..ie 8-14 or when ever the diagnoses.

  • #2
    Re: For parents

    Good question...
    I was diagnosed at 12yrs old - I think I adjusted well, I was not able to continue in all the activities I wanted but I understood that my health was more important. I do think HCM made me "grow up " a little faster than some of my friends. I have a real understanding of what was really important and what was petty at a young age. EX. My friends would get all upset if they did not have the right clothes, date, did not make a team, or what have you... I on the otherhand thought - so what I am here and things will fall into place when it is time.
    My Niece was diagnosed at 8, she is also very well adjusted. We had some tough times after her mom died - but all in all she is doing great.
    I am waiting to find out about my daughter...So I will have to let you know what I think about it from the otherside...should that ever occur. (keep your fingers crossed that I will not have to!)
    Be well,
    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)

    Comment


    • #3
      Re: For parents

      I've got HCM and I have two boys, age 15 and 22, They've been monitored for the last 5 years for this condition. My older one appears to have the early signs while my younger one has no signs. I've discussed the condition with my older son and it seems to go right over his head. He is not symptomatic at this stage. He still smokes, although we've tried to convince him not to.
      I worry for them both because I don't want them to go through the same ordeals in life that I 've gone through. At least now a days there is a better understanding of this condition as was 25 years ago. My feeling is that with the right Doctors and the right Meds as well as catching it early gives you an advantage these days. We're not catching up from 25 years ago, we've caught it in the beginning and are able to treat it before something more serious happens. For me it makes dealing with my kids "potential" problem a little easier.
      Reinhard
      Diagnosed in 1980, ICD Implant 2003, 2nd ICD in 2010.
      Gene Positive, As is my mom as well as one of my 2 sons ( 50% Rule ) and my Grandson.
      Non Obstructive. Atenolol

      Comment


      • #4
        Re: For parents

        Hi Bryan,

        I am a mother to 2 children who both have HCM. They were diagnosed at birth. I have to say yeah, its easier to deal with since they don't know any different. They've been restricted from competitive sports since they could walk. They've known, since they could understand words, they can't do certain things such as roller coasters, etc. Its just the way it is and has been all their lives. If the kids want to do something that may not be good for their heart, I have them call their Pediatric cardiologist to double check. Their doctor will tell them yes if he feels its okay. I don't have agruments with the kids about anything that is heart related because they know what they are permitted and not permitted. So yes its easier being diagnosed at birth than later in their teens.
        Michelle - mom to Krista and Tyler both HCM
        Krista surgeries: 3/97 myectomy, 2/99 mitral valve replacement
        Tyler surgery: 1/98 myectomy

        Comment


        • #5
          Re: For parents

          Hi Michelle -

          I'm glad you posted. It reinforced my feelings on Keanu and the activities that he may or may not want to do as he gets older. I know that it will be easier in that we've known since birth about his problems and that he will hopefully understand about his problems also as he grows... however... Keanu has 2 sisters, two other "siblings" (we have guardianship of two other kids) and another sibling on the way. I worry about how he will feel as he grows and watches his siblings engage in the different activities they enjoy. Keanu is not quite 2 1/2 years-old yet, so I don't have to deal with it yet, but he is already trying to do the same things that his siblings do in gymnastics and karate.

          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


          • #6
            Re: For parents

            Hi, I am a mother a 12 year old daughter. We have always known that there was a good possibilty that Sarah would have HCM, and she has been monitored since I was 7 months pregnant. Each time the conclusion was always the same, until May 26th of this year. That is when we found out. We always allowed Sarah to do as she pleased when it came to sports and stuff, because the doctor said, she didn't have it, so she got into a sport she loved, and now is not allowed to play it, she was very upset when this happened, and at first said that she was going to do the sport anyways. Which of course her father and I both said no to. This is where I feel if they are diagnosed in the early years it is less stressful on them because they deal with it early, instead of getting into activities, then having them taken away.
            Sarah seems to be accepting it better now, thanks to the wonderful people on this message board.
            Life is too short to worry about the trival things in life, So live life to the fullest.

            Comment


            • #7
              Re: For parents

              This is a very difficult call and a very individual one. I do not think the way my husband and I have handled my daughter is "the right" way - but here is the plan - Beeca is 8 and not yet diagnosed with HCM - and God willing will never be - but with my history - well it is highly likely - so we are allowing gymnastics - it is individual and she moves at her own pace - we are encouraging theater, music and non competitive activities at school. Becca was in a sign language club in the 1st and 2nd grades and loved it!
              I think it hurts a great deal to loose something you love as a child - (this coming from a mom who was once a 12 yr old diagnosed with HCM )
              So if we get an all clear - then softball and other sports will be offered as an option - until then there are LOTS of things to do that are not sports related.

              Be well,
              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)

              Comment


              • #8
                For parents

                what signs are seen when a child is diagnosed? I know they may be different per child but I want to watch for the right things instead of shrugging them off.
                My children have other medical issues and I may end up thinking a sign is related to something they already have and ignore it. I am aware of the syncope spells. Those have not happened.
                Is it a correct assumption that if I don't have it and my mother did, my sister does, my uncle does (my mother's brother), my mother's father probably did - he died in much the same way my mother did; then my children won't or shouldn't. I know that I will need to keep testing but if I never have it should they?
                Tracey Shuck
                "Trust in the Lord with all your heart, And lean not on your own understanding; In all your ways acknowledge Him, And he shall direct your paths."
                Proverbs 3:5

                Comment


                • #9
                  Re: For parents

                  If you don't have HCM it's very unlikely that your children will have it either. However, rarely HCM can "skip" a generation. That's why it's recommended to continue to screen your children. Many young people don't experience overt symptoms, but here are a few to look for: inapropriate shortness of breath and fatigue, syncope, palpitations (which they'll have to inform you about), and possibly things like graying out when they stand, seeing stars when they move quickly. There may be others but that's all I can think of at the moment.

                  Reenie
                  Reenie

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

                  Comment


                  • #10
                    Re: For parents

                    We can not assume that you are in fact clear of HCM... you may well have the gene but have not YET shown a sign on echo but may later in life... also you may not have the gene at all. So yes, screen the kids.

                    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)

                    Comment

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