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  • Some Good News

    [Some Good News]

    Author: Amy Williams (---.proxy.aol.com)

    Date: 11-12-02 11:22

    Hi Everyone,

    I just brought my three children back from seeing a HCM specialist. My oldest son was daiagnosed with HCM 7 years ago at the age of 4 months. The thickness was considered quite severe (7 out of 10). he has grown quite a bit, but his thickness has only grown a little, and is very localized (Which is a plus). His severity is now 4 out of 10. My three year old and 2 month old daughters were both screened clear - so far anyway...most HCM reveals itself during the adolescent growth spurt. This is very positive, as it has been a very difficult year for me...I lost my mother after a failed transplant, my HCM has become worse, and I went through an extremely difficult pregnancy heart wise, oh yeah and we had to relocate during my pregnancy in order to be close to a specialist. I am seeing my specialist on Thursday to see if my heart has improved at all since my pregnacy (it became obstructive, with a gradient of about 100). If not, I may be looking at a myectomy (spelling?).

    Just wondering...the specialist found a small hole in my baby's septum. I was told that this is very common, and unrelated to HCM. However, I a hole in my heart, and a friends nephew, who has HCM has a hole in his heart. Maybe it is so common that it is unrelated to HCM, but I am a little suspicious. Anyone have any thoughts?

    Amy

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

    [Re: Some Good News]

    Author: Lisa Salberg (208.47.172.---)

    Date: 11-12-02 11:39

    Hi Amy! Holes are very common and therefore you will see them in HCM and non HCM with some regularity.

    You are useing a scoring system that I am unaware of. Can you explain this 7 out of 10 or 4 out of 10 grading?

    I hope to hear your visit goes well.

    HUGS to all the kids!

    Lisa

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

    [Re: Some Good News]

    Author: Amy Williams (---.proxy.aol.com)

    Date: 11-12-02 13:29

    Hi Lisa,

    Maybe this grading system is an unique Prof. McKenna system. This is the 1st time I heard him use it. I guess what he means is that 10 out of 10 is the most severe HCM, where as 1 out of 10 would be the most moderate. However, I know that the thickness and apearance of the heart may have little to due with symptoms...it does seem an unreliable system. However, since he knows my family history, maybe he is using that scale in relation to what is normal for my family. Anyway, part of his septum is twice as thick as it is suposed to be. However, it is a very localized part of his septum. The only problems that Andre is having is that he can't quite keep up with his friends in sports. Mckenna feels that he is not at risk for sudden death...thank goodness.

    Thanks for your reasurence about the hole. It's impossible not to worry and wonder about your kids when they have a 50% chance of inheriting the disease.

    Amy

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

    [Re: Some Good News]

    Author: Kay (204.184.29.---)

    Date: 11-13-02 14:33

    Amy, if your son has HCM I would not allow him to play sports at any means. My 3-year old was diagnosed this past year and my doctor said absolutely no sports. My nephew's doctor told them he could play sports like baseball as long as he's not continuously running. Not to scare you, be he died at the age of 10 last week while running to get in line after recess. Not a strenuous activity at all. His doctors had just done a stress test on him in August and he passed. Please consider not allowing your son to play sports. I know it's a hard decision to make, but better to be cautious than sorry. Good Luck!!
    NOTE: This is a post from the previous forum message board.

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