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Screening Advice Needed for a V. worried Mom


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Kelly&Bert Find out more about Kelly&Bert
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  • Screening Advice Needed for a V. worried Mom

    Hi everyone I really hope you can help me...my partner was diagnosed with HOCM 3 years ago and is currentlly waiting on a myectomy. We have a three year old daughter who was born with a heart murmur...which went away around a month after birth, doctors have checked her and she doesnt have the murmur anymore. My question really is when should she be screened. My sister in law who also has HCM has been told by her cardiologist not to screen her kids until their teens. My partners cardiologist suggested my daughter be checked at five unless she developed any symptoms. Its so confusing every doctor I speak to tells me something different. How active should i let her be? Do i stop her from running around (difficult as anyone with a three year old will understand). Im so afraid of SD. I just dont know what to do. She hasnt got any symptoms and the cardiologists have no worries but Ihope you can all share your wisdom with me.

    Thank You in advance for your help

  • #2
    As she was born with a murmur in an HCM family it would be a good idea to have a base screening now, it is not likely to show anything - it will however give you some peace of mind. Then screenings should be done at about age 10-12 (Puberty) every year until about age 21 or full growth - then every 5 years thoughout life.

    Hope this helps.
    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)


    • #3

      I answered your screening question under your other post.

      Please use the Search function (link at top of page) to get the five risk factors for sudden death.

      It is highly unlikely that you need to worry about SD in your toddler.

      Many doctors just don't have time to learn and keep up with the latest info on HCM which is why you get different answers. Treatment and care have changed a lot, very quickly over the last ten to fifteen years.

      I highly recommend you take your daughter to a specialist to allay your fears. Lisa can help you find one. England has some top notch guys.