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4 year old screened for HCM

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FatimaR Find out more about FatimaR
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  • 4 year old screened for HCM

    Hello everyone,

    i have a family history of HCM and sudden death as well (cousin at 29, uncle at 22). Unfortunately genetic testing is not available where i live. My father (mid 50s), myself (29) and my brother (27) all got screened by echo and ecg and everything was normal no sign of HCM. We will repeat after 5 years.
    i was concerned about my 4 year old son and had him tested as well recently. The doctor said everythinf normal at this point. His IVS thickness was 0.7cm which doctor said is normal. I am worried this is high for his age (i just obsess too much), anyone with kids of a similar age who got screened and don't have HCM ? If so, please don't mind me asking what was your child's normal IVS thickness ?

    fatima

  • #2
    Hi Fatima,

    I also have a family history of HCM with sudden death. I also have a 4 yr old. However, we were genetically screened and my son is HCM+. He is seen annually for an echo and is so far normal (I'm sorry I don't know his IVS thickness - will ask that when he has his next echo in Sept). In my family, it seems that the condition does not appear until the teen years. It is my understanding that this is often the case with HCM though. My brother had routine echos his whole life and the HCM didn't show up until he was 19.

    I'd highly recommend seeking out the genetic testing. It will give you peace of mind (my youngest son did not inherit the gene from me - small blessing!). Hopefully, since your echo is normal, you don't have the gene and haven't passed it on....BUT I have a cousin who does not have HCM on echo, but still had the gene. Her daughter inherited it and was diagnosed with HCM when she was 14yrs old. The genetics counselors I saw about my son said there is always a chance that you get the gene and don't express it - but can still pass it on.

    Lindsie

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    • #3
      Often the expression doesn't show up until teen years because there is a rapid growth phase at that time. As the heart grows, a greater percentage of its cells may be of an abnormal nature.....or the relationship of the Mitral valve to the septum may change with growth.
      It is also important to know that 50% of genetic testing comes out negative for the current genes being tested. I have only one family member that died an unusual cardiac death at 42. My genetic test was negative. But I have HCM.
      I believe in general, when there is a large family history like yours, Fatima, that there is greater possibility of finding the specific gene....and giving you more specific answers about screening your children and what to watch for.
      After years of symptoms:
      Officially Diagnosed HOCM 2006
      Myectomy 3/11/13 at non-COE
      Extended Myectomy 7/23/14
      At Mayo with Dr. Joseph Dearani

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