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  • children with hcm

    [children with hcm]

    Author: Pam M (206.172.22.---)

    Date: 05-17-02 15:30

    My 2 children- ages 10 and 2 have both had an echo. So far they are fine. I heard that sometimes but very seldom are children diagnosed with it. Usually it comes out in the late teens early 20's. Is that what everyone here was told? Also I know that some people are diagnosed until they are in there 30's 40's 50's etc.

    Were these people not cheched for this earlier or was it missed? Can my sister's-ages 26 and 30 feel safe that they don't have it and never will? (They have both been checked for it.)

    Sorry so many questions, I am still learning.

    Pam

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    [Re: children with hcm]

    Author: Colleen (---.client.attbi.com)

    Date: 05-17-02 16:58

    I was just diagnosed last March, and I am 34. My sister is 30, and shows some degree of HCM. Not to the point of treatment. She was told to return for an echo in 2 years. My brother is 27 and shows no signs of HCM, he was told to return in 5 years. I was told that it usually is developed/diagnosed in your 20's, early 30's. The important part is that BOTH need to have further checkups for this. It can't be checked just once and forgotten.

    I have 2 children, 5 & 2. Both are scheduled for an echo in June. I was told that it will most likely not show any signs of HCM, but it will be used as a baseline in the years to come for further testing. One of my cardiologists said we probably won't have to have them echoed again until their teens. But I will follow though with the advice of the pediatric cardiologist.

    This is just what I've been told. Don't ever be sorry about asking questions. You won't know the answers unless you ask. Please follow up with the professionals. I certainly am not one, I am just trying to work thru this too.

    My turn to ask you a question.......... How in the world do you get a two year old to sit thru an echo?!? My five year old should be able to handle it fine, in fact he'll think it's pretty cool. My two year old daughter is a big wiggle worm, with zero patience. What to do?

    Thanks!

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    [Re: children with hcm]

    Author: s. beckley -moderator (---.dsl.mindspring.com)

    Date: 05-17-02 17:43

    Dear Colleen,

    Your children should have echos every year while they are growing and every 2 years in the 20s and every 5 as an adult. Game playing and bribes may get the 2 year old to be still???

    Dear Pam

    Yes, it is correct that HCM can be "silent" for a long time. However, many people who get diagnosed in their 40s and 50s probably had it earlier, but just didn't know it. HCM is not well understood and often goes unreported or misdiagnosed, so a lot of families would not necessarily know to screen everyone when Auntie So and So died young.

    Screen the children on a regular basis. If you want to talk specifics about kids and HCM, please call the office at 973-983-7429.

    take care,

    Sarah

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    [Re: children with hcm]

    Author: Lynn S. (---.dsl.dytnoh.ameritech.net)

    Date: 05-17-02 22:16

    Dear Colleen,

    I was just diagnosed with HOCM in April 2002 and had to have my 2 year old daughter examined by a pediatric cardiologist just a few weeks ago. Your question of "how do you do an echo on a 2 year old" was my question in the weeks leading up to the exam. To my wonderful surprise, the pediatric cardiologist we saw was terrific and so was the tech! My daughter underwent an EKG, echo and a physical examination and was so entertained by the tech and doctor throughout the appt. I think she thought it was a 'play date'! I held my daughter during the EKG and the tech blew bubbles, sang songs, etc. while it was taking the readings. Likewise during the echo I laid my daughter across me and the tech put a video of "Barney" in a TV/VCR they had set up in the examination room. These tactics along with a warm, friendly tech and doctor made this visit a breeze (I wish I could watch TV during my echos!). Hopefully the ped. cardiologist you will be taking your children to will be as accomadating as ours. Incidentally, the doctor didn't want to examine her again until her teens and then opted to see her every 5 years which I felt more comfortable with as well.

    I hope this is helpful and will keep you in my thoughts during June!

    Lynn

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    [Re: children with hcm]

    Author: Sherry (---.ras11.floca.tii-dial.net)

    Date: 05-18-02 08:29

    Dear, Pam, Lynn, And Colleen,

    I must agree with Sara! We need to screen our children every year. I have spoke with six Pediatric Cardiologists and there recommendation is to have an EKG and ECHO done yearly on the children. Even though most of the research shows HCM appearing in the 20 and beyond, it is also possible to show up in early childhood. The sooner a child is diagnosed the faster treatment can begin. My children are scheduled to see their Ped. Cardiologist yearly through teenhood. Keeping all of you and your children in my prayers.

    Sherry

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    [Re: children with hcm]

    Author: Dolly (---.pressenter.com)

    Date: 05-18-02 13:12

    Hi,

    I have been reading this forum for some time, but have not introduced myself yet. I am the mother of a 12 year old boy, Andrew, who was diagnosed with HCM at the age of 5. Also, my brother's son was diagnosed at the age of 5. Both were discovered at their kindergarten physicals when a murmur was heard.

    My brother's son lost his fight with HCM at the age of 7. A few months later I took my son for his kindergarten physical and requested the doctor pay special attention to his heart due to my nephew's recent death from HCM. this is when my son's HCM was discovered.

    I also know of several other children who have been diagnosed before the age of 6. So children can develope HCM early in life! Our oldest son (17) has had two echoes in the 6 years since Andrew's diagnosis, and will continue to be screened every couple years. So far he is clear! I am screened every 5.

    You can read about my son's HCM and his surgeries/treatment to date, at http://www.designsbydolly.com/andrew

    Good luck to you!

    Dolly

    mom to 12 year old Andrew (HCM)

    Myectomy in 1996

    ICD implant in 1999

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

    [Re: children with hcm]

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

    Date: 05-18-02 21:30

    Dear Dolly,

    Thank you for sharing your experience with us. Will your son be getting an ICD, too? I'm not on top of pediatric HCM like Lisa is.

    all the best,

    Sarah

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

    [Re: children with hcm]

    Author: Dolly (---.pressenter.com)

    Date: 05-18-02 22:01

    Sarah,

    Andrew had a myectomy in 1996 and was implanted with an ICD in June of 1999.

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

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