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Sea Cadets (Summer camp)

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Abbygirl2 Find out more about Abbygirl2
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  • Sea Cadets (Summer camp)

    My son joined sea cadets this year and loves it. He has the opportunity to go to a camp this summer in B.C for two weeks and once again I am caught between letting him experience life and keeping him under my wing.

    Background
    He is 12, and so far HCM free, his last echo/ekg were Spring 2004 and I would hope to have him tested again before he goes(if he does go). Over the past few years he has on occasion exhibited symptoms similar to my own as a kid. At age 3 he was diagnosed with asthma, which lasted about a year. (I know HCM has been misdiagnosed as asthma). He does play sports but has difficulty keeping upto the other kids.


    On the camp application form it explains that they will be camping in the wilderness for possibly 2 days/nights, and will be 30 minutes away from the nearest medical facility. UGH.
    It will be physically challenging but fun as well I'm sure.

    My husband and I have discussed it and 'he' of course says "oh let him go, he'll be fine". But he(my husband) is VERY nonchalant about HCM, and doesn't grasp the seriousness of it. (Some of you may remember the comment he made about me NOT having a life threatening condition.)

    I know this is a decision that only we can make, but I was wondering what guidelines any of the parents here used when assessing the risks of physical activity and what things should I take into consideration when trying to decide. Any ideas?

    Thanks

    Pam
    It's not what you gather, but what you scatter that tells what kind of life you have lived.

    Dx in Feb/99. Obstructed. No ICD, no surgeries, no family history. 2 sons ages 14 and 6.

  • #2
    I can only tell you how I've handled these situations in the past. I would make sure to have another echo before the trip. If he's clear, I would say let him go, as long as he and the counselor are both aware that he has to slow down if he starts to feel bad or short of breath.

    So far my own kids are clear of HCM too. My daughter sometimes shows what I think are early symptoms, but since we can't find any evidence of HCM, I let her participate in all the activities she wants. I have talked to the PE teacher, though, and made sure that he knows if she starts feeling faint-ish, then she absolutely has to be able to go at her own pace.

    Reenie
    Reenie

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

    Comment


    • #3
      Your plan is to have him tested before he goes.
      Along with the tests and the doctors recommendation, you should be able to make a decision.
      If his tests come back clear again and the doctor says sure, then let him have the experience.
      Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
      So if you are capable of thought then you are capable of great things
      Good luck and stay well.
      Glen

      Comment


      • #4
        Every parent has to make their own decisions on these type of issues, but I will share with you my wife and I's thought processes for our son who is active in Boy Scouts. Our son has no diagnosis of HCM, and thus is only at genetic risk of developing the condition at some point in his life. Camping does not per se involve "burst" movements or the lifting of extraordinarily heavy objects. True, kids on camping trips will run around and rough house, but they could just as easily do that at home. We feel that preventing our son from normal socialization and activities carries health risks as well. The Boy Scouts of America require a physician's clearance for all scouts, to be renewed each year. On balance, my wife and I feel that camping is a highly beneficial activity that our son should pursue. I wish you and your husband the best of luck in your decision.
        Jall

        Diagnosed with unobstructed HCM in 2004 after a bad experience playing tennis
        Graduated to obstructed HCM by Dec, 2008.

        Life outside of HCM: Law, Photography, Tennis, Music, raising kids and camping

        Comment


        • #5
          Pam,
          He is clear of HCM by all we know. You have done a wonderful job of following up on his screenings. As hard as it is let him be a normal kid and let him enjoy this experience.
          My daughter will be at camp this summer for 1 week in the middle of no where - They do have an AED (guess who got that ball rolling) but I highly doubt she will every need it!
          Kids need to be kids.

          Good luck!
          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


          • #6
            Pam- My son is 11 and so far clear of HCM but I also feel he has had some symptoms that I watch closely. He is very involved in sports. Football, basketball and baseball. He also has asthma. He keeps up with the other kids but has always seemed to "tire out" faster that others. His last echo was 3 years ago but he had a normal EKG last week. I can't tell him not to play sports but I watch him closely. And of course, I worry about both my kids getting this disease. I can only pray and monitor them closely.
            Heather B. My husband is 37 and has HCM. He had a myectomy in May 2002 and is doing OK now. We have 2 children, 11 and 9 and so far they are OK.

            Comment


            • #7
              Heather, may I ask if you also intend to get your son a new echo soon? The EKG is a good start, but not everyone with HCM has odd readings. I would suggest you get the echo done again soon before he signs on for the next sport just in case.

              Reenie
              Reenie

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

              Comment


              • #8
                Reenie- I do plan on an echo soon. The pediatric cardiologist says the kids only need to have an echo every 5 years. When we were at Mayo last month, Dr. Nishimara said they need to be tested every year. I told the ped. cardiologist this but he still wants to wait. (His nurse said "It's an expensive test to have done every year", like I want to just throw away the money.) My husband sees his local cardiologist next friday and I am going to have him contact the ped. cardiologist and tell him what Dr. Nishimara said. He is very helpful and knowledgeable about this disease. Thanks so much for your concern. I will make sure they have an echo soon.
                Heather B. My husband is 37 and has HCM. He had a myectomy in May 2002 and is doing OK now. We have 2 children, 11 and 9 and so far they are OK.

                Comment


                • #9
                  Heather,
                  Please send an email or a private message to myself or Kelly with the name of the doctor (ped) we can send him an information packet with the current guidelines.

                  He should follow guidelines even if he "feels it is to expensive".

                  Best wishes,
                  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


                  • #10
                    Sea Cadets / Frequency of Checkups for Children

                    If I recall correctly, the advice we recently received from Dr. Nishimura at Mayo Clinic was to have children checked every 3 years, but once every year through puberty.

                    Regards,
                    Rob ("NoCrash"--a long story)
                    (first post)
                    --Living life on the edge .. of a continent!
                    Charter member: Tinman Club

                    Comment


                    • #11
                      No Crash,

                      Where in So. Cal are you? How old are your kid(s), and who are they seeing for their screenings?

                      I have a 3 year old son we are currently screening, and am in West Los Angeles.
                      Daughter of Father with HCM
                      Diagnosed with HCM 1999.
                      Full term pregnancy - Son born 11/01
                      ICD implanted 2/03; generator replaced 2/2005 and 2/2012
                      Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

                      Comment


                      • #12
                        Hi Cynthia,

                        We're in San Pedro, not quite in your area but still part of L.A.

                        The kids are a daughter, 6, and a son who just turned 13. We took our son up to UCLA for screening a few years ago with negative results (yeah!) but a caveat that positive results could show up anytime. Our daughter hasn't been screened yet, but will be before long.

                        The good folks at Mayo clinic suggested that the kids could be screened by my local cardiologist (in Torrance), who does seem to know what he's doing and is clued-in as to the hereditary nature of HCM. Given the news around here lately (I will need a transplant) we are leery of getting the kids "worked-up" any further right now, so we'll put off further screening a couple of months.

                        The UCLA visit (which is in West L.A. for those unfamiliar with L.A. geography) getting our son screened was pretty painless (except for the travel up the 405).

                        Your earlier reply about getting your 3-yr old an echo was brilliant, BTW.

                        One of these days I'll work up my own history with HCM which is similar to alot of the people writing in this forum.

                        I'm sure we'll be talking soon. I'll PM my e-mail address.

                        Regards,
                        Rob Thomas
                        --Living life on the edge .. of a continent!
                        Charter member: Tinman Club

                        Comment

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