If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

Young kids and ICDs ?? Who is out there?

Collapse

About the Author

Collapse

bulybuly Mother of a six-year old daughter diagnosed with HCM, wife of a wonderful man just diagnosed Find out more about bulybuly
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • 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?

  • #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

    Comment


    • #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?

      Comment


      • #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

        Comment

        Working...
        X