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Young kids and ICDs ?? Who is out there?

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bulybuly Mother of a six-year old daughter diagnosed with HCM, wife of a wonderful man just diagnosed Find out more about bulybuly
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  • #1

    Young kids and ICDs ?? Who is out there?

    Hi All

    I know that young kids are rare in the HCM world to get AICD's as protection but I know there are some! My daughter, age 6 almost 7, will be joining that group soon due to her massive 38 cm septum....so who can tell me about their experiences? I've heard via private message from only one who had the abdominal placement, which is what my daughter will need given her size--I would love to hear from others who have experienced the abdominal placementt for self or loved ones or even known abou---not going through veins, but directly going to the heart (surgeon stuff)---there is concern about the teeny veins collapsing and she's a year or two away from a size that allows for the shoulder placement.....and i also wonder where folks went for this...who has done the most of these very few, yet important, surgeries....apparently pretty darn rare....and that doesn't make it an any easier decision....

    Thoughts? Experiences? Resources?
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  • #2
    Re: Young kids and ICDs ?? Who is out there?

    I know you will get valuable input from others who have been thru this, but please call the HCMA office if you have not yet done so. Your questions can be much more specific and the same with the answers.

    There's nothing like reassurance from one who has been there, and you will get that support here.

    Best wishes - Linda

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    • #3
      Re: Young kids and ICDs ?? Who is out there?

      Still looking for families with young kids or if you were young yourself, when you got your ICD---

      My daughter is close to big enough for a shoulder placement--probably a year, perhaps two away---

      So if we do it now, needs to be epicardial---and per EP that has lots of post-probs and should be avoided if possible--

      Anyone else out there????? Where are the kids with ICDS?

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      • #4
        Re: Young kids and ICDs ?? Who is out there?

        bulybuly,
        I was 16 when I first got my ICD. This November will be 15 years, since my implant. My placement was in my abedomin and still is. I know 16 might not be the age you are looking for (probably someone younger), but feel free to send me a private message or shoot me an email. Or If you would like I could even give you my #. Just let me know.

        Bryan

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