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Defibrillator for my 5-year old

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  • #1

    Defibrillator for my 5-year old

    We went to the Mayo Clinic in Minnesota last week for a second opinion on whether or not my 5-year old needs an implantable defibrillator. They decided he did and scheduled surgery for yesterday, August 3. Before doing the surgery they did a chest x-ray on Monday evening which showed he had a small amount of pneumonia on his left lung. He never had any symptoms, sneezed a couple of times last week, no cough nothing. They sent us back to Missouri staing to see his pediatrician and reschedule his surgery for 7-10 days. Upon seeing his pediatrician this morning the chest xrays show all clear. Here's my concern:

    I had the same thing about a month ago. No head cold, cough, runny nose - nothing. Went to the doctor with chest pains thinking it was my heart. They did chest xrays to find out it was pneumonia. The Echo showed nothing to do with my heart. They put me on antibiotics it went away for a week and then came back. They put me on antibiotics and did a c-scan which showed everything was fine. My concern is....Is this a coincidence or could this have something to do with HCM?

    My other question is has anybody else had a defibrillator implanted on a child weighing 43 pounds or less? The doctor agree he needs a defib, but are concerned about his small body and where to place the device. Please share your situation and advice for before and after surgery. THANKS<
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  • #2
    Re: Defibrillator for my 5-year old

    Kay, I'm a little concerned about the pneumonia thing. When my daughter had pneumonia I asked the doctor about another chest xray about a month later to be sure it was gone. They told me that her xray wouldn't look a lot different in a month because the scarring (my word, not theirs) doesn't heal that fast. Are you sure it was pneumonia? Could it be other fluid?

    On the ICD issue, I have no experience with that. I wish you and him the best of luck.

    Reenie
    Reenie

    ****************
    Husband has HCM.
    3 kids - ages 23, 21, & 19. All presently clear of HCM.

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    • #3
      Re: Defibrillator for my 5-year old

      Kay -
      I tried to call you Tuesday - can you call the office I need to ask you a few things. We can talk about the ICD also.

      take care,
      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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      • #4
        Re: Defibrillator for my 5-year old

        Reenie Thanks for the advice. I called the surgeon back at Mayo and he says there was deffinately "something" on his chest xray. Some hazing he called it in the bottom left lung. He says it may have been pool water since we had went swimming at the hotel pool the day before. He is to call me today with a definite time and date next week to drive back up for surgery. You are right about the scarring because I did have scarring from the pneumonia that I have. I guess it was just a coincidence.

        Lisa: I have called the office and left a message with my work and cell phone numbers. Please call any time. Thanks,

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