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What COE is best for a child?

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balltvols22 Male, 37, Awesome Wife, 4 boys, and a little on on the way Find out more about balltvols22
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  • What COE is best for a child?

    I am 37 and have HCM and am currently just being seen by a local cardiologist. My 4 year old son has HCM and is also being seen by a local cardiologist. I took him for his check up last week and was told he needed to be put on a BB and may need the surgery if that doesn't help. I feel like I need to take my son to see someone who specializes in HCM and I also believe I need to see someone, as well. Where would you recommend I take my son in which I could also be seen?

  • #2
    Re: What COE is best for a child?

    Welcome! Your smart to get an evaluation at a COE who will also work with your local doctor. Usually most COE have separate doctors for pediatrics. But I'm sure the staff all communicate with one another. Here is the list of COE - https://www.4hcm.org/hcm/finding-an-...or/427832.html
    You may also call the HCMA office 973 983 7429 and see if there is a preference for your particular case. Please also consider introducing yourself in the "Hello. . . my name is " section
    Good luck!
    Marc
    Diagnosed @ 48
    Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
    Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
    AICD - Valentines Day '08, Spark Plug replaced 11/14
    After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
    Quietly going insane . . .

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    • #3
      Re: What COE is best for a child?

      Lets talk and find the right match of a program for YOUR family... I will tell you that in 16 years the number of kids under 13 that needed a myectomy is really low... well under 20 out of 5000 families.. so i would not panic... lets get this little one seen at a high volume program.... our kids deserve the BEST!! Talk to you soon!

      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)

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