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OUR 14-YEAR OLD SON COLLAPSED AT SCHOOL AND WAS REVIVED WITH A IED. HE WAS DIAGNOSED WITH CPVT, PUT ON BETA-BLOCKERS AND IMPLANTED WITH A IED. HE IS CURRENTLY HAVING PROBLEMS WITH THE IED (UNDERCOUNTING AND OVERCOUNTING HIS HEARTRATE) AND DOCTORS WANT TO REPOSITION LEADS. DOES ANYONE HAVE ADVICE OR EXPERIENCE WITH THIS?
Dear Chris
My daughter (aged 7) has just been diagnosed with CPVT after collapsing a number of times. It is very early days for us and so i am trying to find out as much as possible from others with experience of CPVT. Would you be willing to discuss your experience and what information you have discovered.
Many thanks
Charles
You might find the following forum really helpful:
http://www.icdsupportgroup.org/board/
It is very active and has several parents in similar situations.
Karen
Hi Charles and Chris
I am 52 and have known I have CPVT for 5 1/2 years. I had a sudden cardiac resuscitated death and that is how I found out.
I have had lots of lead problems. Twice they came out and once it was reading a double T wave and therefore giving me unecessary shocks.
I would recommend having leads repositioned or whatever they are suggesting because your child really isn't getting protection from the ICD if it is not working properly. I had 4 surgeries in 2 1/2 years and was pretty despondent by the end of it all. I have been problem free for 2 years now but am not recovered from the ICD malfunctions yet psychologically. If they can fix things in one more surgery I would go for it.
Tess,
thanks for the advice. Our 15-year old son did go ahead and have his leads replaced. At this point, it looks like it is working pretty well so we are keeping our fingers crossed. His doctors have also reduced his beta blockers and put him on a calcium channel blocker so the side effects of the medicines have also diminished (the calcium channel blocker seems to be a new recommendation by the experts based on CPVT being basically an electrical problem related to calcium overload). He has started to play tennis again and seems to be doing well, He is a pretty active teenager so I hope the leads aren't affected by activity levels. Chris also had some inappropriate shocks when his ICD was not working so I do empathize with your past problems. I can't imagine having four of those surgeries in two years.
Thanks,
Christi
HI Christi
I'm glad your son is doing well and being physical. Too bad these leads aren't made a little better.
I am sooo glad your son survived. We are trying to get AEDs into the highschools in the city I live in (London, ON).
Does your son know about working into physical activity greadually so you are slowly increasing the amounts of adrenaline produced and that afterwards to gradually slow down so you are working out the adrenaline left in your system?
Stay well.
Theresa
Hi Charles
I also have a daughter, aged 7, that the docs want to put an ICD--she has HCM, a different disease--but also very risky for SCD. I'm wondering what has happened with your daughter--did she get it? If so, abdomen or shoulder? And where? I'm having a hard time finding really experienced folks for pediatric ICDS! It's scary...
I am sorry. I have nothing to tell. I wanted to ask a question. I might be positive for CPVT. Its a good chance. My cousin Diana has died from it along with my grandfather, and 3-4 of my aunts and uncles. I am quite worried. I have felt slight fluttering in my heart but I don't know what to look for. When I am very active I get tired very easily. And also feel like my legs are giving out and I am going down. I am not sure what I should be looking for. For symptoms, is it only fainting? Or is there other symptoms as well. If someone could shed some light on this it would be so helpful to me. I am eighteen and don't know very much about the diesease.
Thank you
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