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Is there anyone out there that has a child with Prolonged QT syndrome?

I have a child with Prolonged QT. We discovered it in 2005 when he collapsed in our backyard and my husband brought him back. He had a defibrilator inserted and things were relatively calm until Nov. 7th, 2009. He had another episode and his icd went off 6 times before we got him back. I am having an incredibly hard time dealing with this. He got the gene from me and I feel incredibly guilty and the fear is just overwhelming. If there is anyone out there with a similar situation I would love to hear from you. I feel like I can't talk to anyone because I don't think they understand.

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jenna43

Asked by jenna43 at 9:04 PM on Jan. 8, 2010 in Health

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Answers (2)
  • Sorry to hear about your son's relapse. We don't have that issue with DS. We have a list of other issues, but I can understand how frustrating it feels when you don't have anyone to talk to about his condition.

    And, in the next few months we're gonna find out where he got the gene from. Exciting to know but scary all at the same time!
    Vero0724

    Answer by Vero0724 at 9:25 PM on Jan. 8, 2010

  • I feel for you. I'm a nurse and am very familiar with prolonged QT. All I can say is this MANY MANY MANY people live long happy lives with it. You can not change your genes or his do not feel bad about it. .. I'm a firm believer that no matter what illness you have when it is your time you go not a moment sooner or a moment later then what was supposed to be. Good luck to your son and you enjoy life and do not feel guilty
    MELRN

    Answer by MELRN at 9:47 PM on Jan. 8, 2010

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