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My 5 year old son has HOCM

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  • My 5 year old son has HOCM

    [My 5 year old son has HOCM]

    Author: Tina (---.proxy.aol.com)

    Date: 02-28-02 19:54

    My 5 year old has just been diagnosed with hypertropic obstructive cartiomyopathy. The cardiologist seemed to be insulted that I asked for a 2nd opinion. She said we really have to wait to see what happens when he becomes an adolecent. That is of course if he lives that long. I am really frustrated with her right now, He is my life and I can't sit here and wait, she only sees maybe 4 patients a year with this condition and she said that noone is going to do anything more than she is. What do you all think? I am in a major state of confusion right now, He is on medicine for the obstruction, I want him to have the best. I want someone to try and make him live a halfway normal life. At least give him a chance. She said that he is not at high risk because he hasn't had cardiac arrest yet. Is this the way all of the doctors see things. HELP if you can.

    Tina

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    [Re: My 5 year old son has HOCM]

    Author: Bob (---.dyn.optonline.net)

    Date: 03-05-02 12:57

    Hi Tina,

    I also have HOCM, was diagnosed 8 years ago. My local cardiologist had six patients with HCM. He made it clear to me at the outset that he was not an expert in this not-so-common disease, and he welcomed my seeking an expert opinion. I did so, and never regretted it. I continue to see my local cardiologist ( also is my Primary Care Provider) regularly, and the HCM specialist infrequently, but whenever my condition changes or I need expert advice. This has worked fine for me.

    I read recently that if a physician objects to a second opinion, this may be a sign that he/she lacks confidence in their own opinions. I myself would run from any doctor who put their own vanity ahead of my well being. You definitely should have your son seen by a recognized HCM specialist.

    Good Luck,

    Bob

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    [Re: My 5 year old son has HOCM]

    Author: sarah beckley (---.dsl.mindspring.com)

    Date: 03-07-02 02:42

    Dear Tina,

    I strongly, strongly second Bob's feelings about any doctor who doesn't relish a second opinion.

    There is no reason to wait around to see if he has an attack. What medication is he on?

    Also, do you have other children? Do you have HOCM or your husband? Have your (or his) siblings been tested? Whenever you find 1 case of HOCM, you usually find a few more. Everyone should be tested if at all possible.

    The HCMA has some great resources for you regarding finding a doctor. I'll forward your post onto them.

    Keep us posted.

    Sarah
    NOTE: This is a post from the previous forum message board.
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