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To ICD or not, that is the question

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Dee Find out more about Dee
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  • To ICD or not, that is the question

    My son recently had an appointment with a very well regarded Pediatric Electrophysiologist from Children's Memorial in Chicago. I was really impressed with the information I got from her. I learned several new things from her with in 5 minutes...things that I'd NEVER heard before from his regular PC in over 3 years!

    I'm kind of uneasy and unsure about the ICD issue. While there is no "smoking gun" reason to put an ICD in Dylan at this time (i.e. passing out, history of it in the family, etc.) she seemed to want to. She covered all the problems associated with putting one in a three year old - open heart surgery, only last 5-6 years tops, possiblity of going off inadvertantly. But then said if we found a history of it in the family (we're looking!) or if he passed out ....or even if I were to tell her that I couldn't go on without knowing that he has one in him that would be enough for her to recommend it. That he is at very high risk for ventricular arrythmias - I *believe* she was basing this on his obstruction and age of diagnosis (6wks) but I'm not positive.

    We have an appointment with Dr. Towbin at Texas Childrens Hospital on Feb 6th, so I'm pretty much just waiting to find out what he has to say and hope that they compare notes. In the meantime tho, I was wondering if anyone else out there had an ICD put in their child and if so, what were the reasons, etc? Any info would be greatly appreciated!!
    Dee, Mom to Dylan
    (Almost 7 yrs old, HOCM, Endocarditis/Stroke 1/01, Myectomy/Valve Repair 4/04)

  • #2
    Dee, I'm glad you're seeing Dr. Towbin soon. Just wanted to add something about the ICD placement. I don't know for sure with a 3 year old, but for an adult it isn't open heart surgery. They make an incision under the collar bone on the left side of the chest and put it there in an adult. They just run the leads through a vein. I may well be different for pediatric patients. I just don't know. I just thought that if the procedure is the same, it might make you feel better about it.

    Reenie
    Reenie

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

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    • #3
      Thanx Reenie I *think* (still researching) that for smaller kids they put the ICD in the stomach area and run the leads up to the heart then - because they are too small yet. Not for sure but I'm hoping someone else here can say for certain.
      Dee, Mom to Dylan
      (Almost 7 yrs old, HOCM, Endocarditis/Stroke 1/01, Myectomy/Valve Repair 4/04)

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      • #4
        The chest is to small on a child and therefore the device is in the abdomen.
        Not an easy choice Dee - but you are going to the best people for advise I am sure they will help you find the best answer for your little sweetie!
        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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        • #5
          I know Im alot older Dylan, but my ICD is in my abdomen. They start with a small incision (horizontally) underneath your collar bone to insert the leads. You are not under anestsia (?) at this time just a local. For me this was not done in the operating room. After the leads were in place I was then wheeled down to the operating room to have the actual device implnated, at which time you out. Again this was done nine years ago so I dont know if its done differently, since things change ALL the time. And I was also 16 so it could be different from a 3 year old. I hope I was of some help.

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          • #6
            Dee,
            This is a repost as something went wrong while typing so it may show twice. My 12 year old had his Icd placed in his abdomen 3 years ago following a cardiac arrest in a Denny's parking lot on Mother's day. Since then he has had 5 zaps for v-fib. That means 6 funerals he (and we) have missed. We did not know he had hcm as they planned to start screening our kids at 15. He was completely symptomless till this point.
            An ICD is there to prevent SUDDEN DEATH (IE WITHOUT WARNING OR PRIOR SYMPTOMS.) Dee, I can't make your decision for you, but I think you get the gist of my emphasis. HCM is a killer especially in the young,
            if he has an icd and doesn't need it, great. If he does need it and it isn't there, there is no turning back. I don't know what else I can say. By the way, I firmly beleive that God does heal, we are beleiving for our son and myself. If I can answer any questions, feel free to write.

            Art Geddes
            [email protected] or
            [email protected]

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            • #7
              Art - I am so very happy that this wonderful technology saved your son...and so many times!!
              Dee - it is a hard call and I know you are doing your very best to make the right call for your family.

              Best wishes to all,
              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)

              Comment

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