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SheliRenee Find out more about SheliRenee
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  • No Nos and must haves

    Hi Everybody -

    I was wondering something.... Is there anywhere that lists the things that a person with HCM/HOCM should NOT have and should be certain to have?

    I know about the water to keep hydrated and that decongestants are a No-no (unfortunately!! - How do you deal with it when they are all stuffy - Keanu already has a hard time breathing). I have also been told that antihistimines are a no-no, but I also heard that they were fine to administer.....

    I really don't want to harm Keanu and any information would be great. Thanks.

    SheliRenee :P
    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

  • #2
    SheliRenee,

    Who told you that antihistamines are a no-no and why did they say that? There is no stimulant in them. The decongestants have stimulants in them, that's why they aren't considered safe. Have you considered getting a Medic Alert bracelet for him? I think it would be a good investment. I do understand that Benadryl has a decongestant effect without the stimulants.

    Reenie
    Reenie

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

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    • #3
      Reenie -

      When I first was told about Keanu's condition, I somehow found a lady (don't know where I got her name and number from) who has a little girl with HCM. She was the one telling me about the decongestants and antihistimines. The pc never told me anything like this... that there are things to avoid and things to NOT avoid. At the time, that's all I had to go on. Now that I have found this forum, I figured I could make sure that I got all the right information.

      Keanu has been wearing a MedicAlert bracelet since his diagnosis (paranoid mom here).

      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

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      • #4
        Hello ~ When I was at Kollin's appt. on Friday I specifically asked the doctor about Benedryl and Sudafed. He is on prescription forms of both for allergies. He takes them from the middle of March till August . I was informed that both were fine to take but he is only a beta blocker. I don't know about any other meds used in HCM and his is in the mildest of stages right now as well. He just said if he became overly tired while on the beta blocker and the Benedryl we'd need to see if there was something else to put him on. And the beta blocker would help to regulate the stimulants in the Sudafed. I don't know if this helps at all but it is my 2 cents worth. Take care everybody! You're all in my thoughts.
        Good friends are good for your health.
        --Irwin Sarason

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        • #5
          SheliRenee, Keanu is so young, just call his doctor's office and ask specifically what he can use. Age makes a difference. Your doctor knows all the small details that may not seem quite as significant to you or any of us on the message board. You want to be safe. Just tell your doctor you want to know in advance, what you can use for cold symptoms, etc. Linda

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          • #6
            Linda is right. I forgot to mention that Kollin is four, so obviously meds will be different between him and a younger child just like they affect kids differently then adults. Your best bet is to speak directly with his doctor to be safe. Good luck and God bless!
            Good friends are good for your health.
            --Irwin Sarason

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            • #7
              Re: No Nos and must haves

              Hi all!

              I wish to add 2 more things - that I think are obvious...
              1) small meal - so your body and heart will not have to work hard during digestion.
              2) teaching our children to eat right - what is healthy and what not.

              And one more - to take antibiotics before going to the dentist.
              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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