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  • new to board -- Children's Hospital in DC?

    [new to board -- Children's Hospital in DC?]

    Author: Art Grinath and Karen Nelson (---.s172.apx1.lnhdc.md.dialup.rcn.com)

    Date: 09-16-02 00:36

    Hi, I'm Karen, partner of Art (39, diagnosed with HCMA in 1986) and mother of Silmarien (15 months). I've been lurking here for a few weeks -- long enough to find out that contrary to what we were originally told, the probability of passing HCMA on is quite high. My pediatrician is happy to give me a referral to have Silmarien tested, but I'm wondering if anyone has experience with doctors or facilities in our area (Maryland side of DC). The easiest facility for me is Children's Hospital in DC.

    Thanks in advance -- its great to find such a knowlegeable and helpful group of people!

    -Karen Nelson.

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    [Re: new to board -- Children's Hospital in DC?]

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

    Date: 09-16-02 01:12

    Dear Karen,

    Have you read the rest of the site's info on HCM? I highly recommend buying the HCMA Patient's Guide to HCM that you can get by calling the office at 973-983-7429. You can also talk to Lisa when you call about finding a doctor --and it sounds like you probably need one for hubby and for your daughter since if you are not getting accurate info about HCM you need to consider if hubby is getting the best treatment possible.

    I know of HCM clinics in NY and Boston, but not DC. The NIH is not recommended by the HCMA since they focus on research and not treatment. Lisa can give you all the specifics about different clinics.

    HCM is an autosomal dominant trait which means that your daughter and any other children will each have a 50/50 shot at having HCM. She should get an echo every year till her late teens/20s and then every 2 years and every 5 years after 30. Some strains of HCM don't show up till late in life although the early teens is most typically when symptoms appear.

    That is a great name you gave your daughter, can I ask its origin?

    Sarah

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    [Re: new to board -- Children's Hospital in DC?]

    Author: Linda (---.wmnsmd.adelphia.net)

    Date: 09-16-02 12:33

    Dear Karen, Welcome to the message board. Sarah is right, call the HCMA office to check on nearest "HCM Specialists" in your area. Before you set an appointment, ask questions carefully. "How many patients do you treat with HCM? What treatment options do you offer? Who do you consult or refer to for situations you have difficulty handling?" These are just a few questions to consider. No one is expert enough to be able to confidently tell you they have seen it all or done it all. You may need to check 2 different places for pediatric and adult. People who are traveling to get to a specialist are not listing Maryland/Wash,DC as a destination on the message board, so you may have to check out a few different places and be willing to travel. The best care is worth it, your family is worth it. Best wishes to you and your family. Linda

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    [Re: new to board -- Children's Hospital in DC?]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 09-18-02 11:29

    Welcome to the board and I look forward to speaking to you further. Your child is very young and screening is not urgent at this age (unless there is a murmur or other problems that you may suspect heart related problems). A regular screening should begin at age 10 and be done annually each year til age 20-25 then every 5 years through the rest of life. there is no protocol for screenings befor the age of 10, we recommend at age 4 or so and every 2-3 years.

    IF you have a family history of children with HCM under the age of 10 then you will want to screen annually from birth - again nothing written on this yet, just observational data at this point.

    Best wishes,

    Lisa

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    [Re: new to board -- Children's Hospital in DC?]

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

    Date: 09-20-02 00:49

    Karen,

    I have a 9 month old daughter with HOCM, diagnosed at birth.. I take her to a cardiomyopathy specialist at Columbia Presbyterian Hospital in New York by the name of Daphne Hsu. She is wonderful and was highly recomended by Dr. Jeffrey Towbin who is probably the most knowledgable doctor about cardiomyopathy in the very young. My daughter had a murmur and that is why she was tested. I have three other children and it was recomended by Dr. Jeffrey Towbin that they be screened every two years going forward. They were all screened when my daughter was diagnosed but their ECHOS were clear. Good Luck to you.

    Michelle, mother to Elizabeth
    NOTE: This is a post from the previous forum message board.

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