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  • HCM Specialist???

    [HCM Specialist???]

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

    Date: 11-16-02 19:26

    Hi Everyone,

    My son Brandon is 15 years old, and was diagnosed with HCM 2 years ago. Previously, he was diagnosed with a subaortic stenosis in the left ventricle of his heart when he was 6 years old and has been going to a Pediatric Cardiologist in New Brunswick, New Jersey twice a year since he that time. At his last visit with the pediatric cardiologist I was told that his heart has become quite thick now. And the doctor put him on a beta blocker, Corgard, which the he feels will help protect him from a sudden incident. Brandon has no symptoms at all. I just found this web site recently and had no idea that there were HCM Specialists. Can anyone tell me if there are any in NJ or where the best place is to go for someone with this condition to get the proper help. I read on the message board about someone going to the Mayo Clinic. Is that the best place to get help???

    Thank you for any info.

    Karen

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: HCM Specialist???]

    Author: Board Moderator (Sarah Beckley (---.client.attbi.com)

    Date: 11-16-02 19:47

    Dear Karen,

    Well, I'm VERY glad you found us because Corgard will not prevent a sudden death event. Beta-blockers are good drugs and they certainly help a lot of people and do save lives in some cases, but it is not something that is going to prevent ventricular fibrillation. You son needs to be evaluated by a specialist. If you use the search function at the top of this page and search for "risk factors" you will find the discussions bout what they are for sudden death.

    Subarotic stenosis is what they used to call HCM (just one of many "old" names).

    St. Lukes in NY is the closest adult HCM specialist center; I don't know the peds doctors as well as Lisa does (the president of the HCMA). However, if you e-mail the HCMA at the e-mail link above with your name, address, and phone and that you need a ped. card., they will call you.

    You don't mention the rest of the family. You should all have been screened for HCM as well.

    Please read the rest of the web site (not just the board) for a lot of good info on HCM.

    take care,

    sarah

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    [Re: HCM Specialist???]

    Author: Lisa Salberg (167.165.39.---)

    Date: 11-17-02 03:33

    Karen,

    I am currently in Chicago at the AHA meeting...I will return home to NJ Thursday. I live in Morris County. Call me on Thursday evening at te HCMA office - number on home page... until then do a little homework...

    what is his septal measurement, left free wall, is he obstructed and has the rest of the family been screened? We have a number of good ped. cardiologists in NJ but it is a good idea to have him evaluated by a specialist, we can talk about that next week.

    Sarah is right that Corgard does not protect against sudden death but it is a good med for HCM ...it helps the heart relax.

    I am in a rush to get to the meeting...sorry to be so short.

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: HCM Specialist???]

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

    Date: 11-18-02 14:37

    Dear Sarah & Lisa,

    Thank you so much for your reply. I looked up the risk factors as you suggested. I knew about some of them, but not all. I will call Lisa Thursday evening as she suggested to help me find a specialist to evaluate him. I'll call Brandon's cardiologist tomorrow to find out the measurements.

    You both asked about the rest of the family. Well - I took my daughter (19 years old) in January for an echo at the suggestion of Brandon's cardiologist. I was told she does not have it. I had an echo done 2 weeks ago (in a regular doctors office) but do not have results yet. (I am 46). My husband is 56 and has not been tested at all. He does not have any HCM in his family that we know of. His parents have been deceased some time now but died in their 80's. We are not sure, but my mother thinks that it may come from her side of the family. An uncle of hers died in his early 50's. And they were told that he had a ridge in his heart when they did the autopsy. . My mom is 79 and had a triple bypass 10 years ago, but no HCM. My sister had an episode with Endocarditis in her 20's (she is 51 now) and is still monitored by a cardiologist, but no HCM. I know that it is genetic, but we are just not sure who it came from.

    I just can't thank you enough for this wonderful web site. You have given me so much info and hope already.

    God Bless

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

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