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I'm so worried!!

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  • I'm so worried!!

    I'm new here... my mom was diagnosed with Hyperthropic Obstructive Cardiomyopathy about a month ago. I took my children for echocardiograms yesterday. The dr. said my daughter should be seen again in two years. They want to see my son again in six months. They were concerned with something on his echocardiogram. They said it could possibly be that he is just about to go through a growth spurt, but will need to check again in six months. I don't know what to think. My son is 10 years and plays competitive soccer. I can't stop worrying. Why would a growth spurt look similar to this? Is it true that this can develop at any time? What if it develops at some point during the two years, before the next echocardiogram? I'm so scared!

  • #2
    Re: I'm so worried!!

    Do not worry..take some action..first you will get the facts...and then you will feel more comfortable with whatever the answer is.
    Lets start with the echo. Ask the doc for a copy of the echo report. Then ask what in the report concerned him/her. Regarding your daughter, How old is she? it is suggested that children in HCM families be annually not every 2 years.
    We are here to help you...take a deep breath and take one step at a time.
    Lisa
    Knowledge is power ... Stay informed!
    YOU can make a difference - all you have to do is try!

    Dx age 12 current age 46 and counting!
    lost: 5 family members to HCM (SCD, Stroke, CHF)
    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
    Therapy - ICD (implanted 97, 01, 04 and 11, medication
    Currently not obstructed
    Complications - unnecessary pacemaker and stroke (unrelated to each other)

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    • #3
      Re: I'm so worried!!

      My daughter is 9 - I don't know why they said every two years. The doctor said it looked like 'some thickening was going on' on my sons echo - but said it's probably just that he's gonna have a growth spurt.

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      • #4
        Re: I'm so worried!!

        I am generally skeptical of any doctor who says "this is abnormal, but it's probably nothing" especially when you have HCM in the family. Lisa is right, get the echo report and get your son to a specialist (the office can help you find one).

        take care,

        s

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        • #5
          Re: I'm so worried!!

          Thanks, I'll do that. I took them to a pediatric cardiologist. What kind of specialist do I need to take them to?

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          • #6
            Re: I'm so worried!!

            LA Mom, where are you? Are you in Los Angeles? If so, I may be able to point you in the right direction.
            Daughter of Father with HCM
            Diagnosed with HCM 1999.
            Full term pregnancy - Son born 11/01
            ICD implanted 2/03; generator replaced 2/2005 and 2/2012
            Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

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            • #7
              Re: I'm so worried!!

              No, I'm in New Iberia, Louisiana

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              • #8
                Re: I'm so worried!!

                I am from New Orleans, but I wasn't diagnosed until I moved out here. Sorry, I wish I could help. You might be better off at Tulane or L.S.U. though for nearby.
                Daughter of Father with HCM
                Diagnosed with HCM 1999.
                Full term pregnancy - Son born 11/01
                ICD implanted 2/03; generator replaced 2/2005 and 2/2012
                Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

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