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SheliRenee Find out more about SheliRenee
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  • How do I know???

    My son, Keanu, sees his pc at the International Heart Insitute in Loma Linda, California. I was never given a choice on who he would see. What sort of questions should I ask this pc to clarify just how much he know about HCM (besides the obvious, "How much do you know about HCM?")? Is there anybody at that facility that can be recommended by somebody who's been there? Thanks,

    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

  • #2
    One question I would ask is how many patients they see with the condition. That's what I asked my doctor. He said he sees about 15-20 a year. I would like my husband to go to someone who sees that many a month, but he won't budge. The nearest doctor who is a specialist and a good match for us is in LA but since he doesn't accept our grade of our insurance, we would have to pay more out of pocket than he's ever paid on himself before. So he's content to stay with the status quo. As far as your sweet little guy, please give Lisa a call @ 973-983-7429 and she can tell you the name of a specialist for kids. Good luck.

    Reenie
    Reenie

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

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    • #3
      I agree with Renee. Ask how many patients he's seen with HCM, how much he knows about it and make sure he is willing to discuss your son's case with specialists. My children's cardiologist is not a "specialist" on HCM, but he has approx 12 to 15 kids as patients (incl. my 2). He always discusses my children's cases with specialists in Cincinnatti and Chicago before we do anything invasive to make sure there is nothing else to try. If you have any feelings that you really don't trust that doctor, then maybe you need to look for someone else. I also got a 2nd opinion from another Dr. which reinforced our PC. It sure made me feel more comfortable!

      Hope this helps!
      Michelle - mom to Krista and Tyler both HCM
      Krista surgeries: 3/97 myectomy, 2/99 mitral valve replacement
      Tyler surgery: 1/98 myectomy

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