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Child with ICD
My 14 year old son has had an ICD for 15 mos. In june he had a ICD storm and was shocked 8 times in 20 min. He has ventricular tachycardia. He had 4 open heart surgeries before he was 6 weeks old. He has tachycardia from scar tissue from multiple heart surgeries. His heart rate goes over 300bpm. He has had a total of 9 shocks and it has charged up on several occations. He has always been shocked when he was playing; therefore he doesn't play . He has alot of anxiety and has panic attacks.He is so scared he his going to get shocked . HIs first shock is set at 25 jewels and 35 jewels after that. This is a pretty good jolt. We went to the Mayo Clinic in MN 4 mos ago and they did a 6 our procedure on him and they are almost 100 % sure they fixed it. When they first took him in to the cath lab to do the procedure they had to shock him with the external AED. they did something different because they were not going to be able to fix it the first orginal way. This is a very long story and very difficult to explain. ... It more than any child should have to deal with.... thanks anita
5 Comments
Mayo's the best
by mo-dixie - 2008-04-05 01:04:00
Anita, I am sure you and your son went to the children's hospital in Mn. My experience with the adult side has been excellent. They tried a ablation procedure that they could not do after all. It shows that even the best can not always figure out the VT mysterys.
I get the 35 joles for my shocks also. I can understand his fear. Everytime my heart starts thumping, I begin to hold on to things and freeze on the spot. To have a storm of that many shocks would be a unbearable memory that I am sure he can not erase from his mind. If you are real lucky, you go out before the shocks begin. I always have dreams that I am being shocked when I am not. Sometimes the memory fades, and you can get on with your life---but that fear of BOOM inpact in your chest never goes away. After adjusting my meds that my local EP never even tried, I am doing better. I think Mayo's has the best chance of helping him. My thoughts are with you and with him. None of us should have to live with this fear when it seems the rest of the world just goes by with normal life. Being 14 is tough enough without wondering when you are going to get knocked across the floor again. Tell him I am thinking of him and hope it will settle into a routine he can live with-----as it appears we can not live without the ICD's. Rotten choices he is faced with.
Love and light and NO MORE SHOCKS,
Dixie from Missouri
heart
by nat - 2008-04-05 01:04:45
Hi, I am a 22 year old who had open heart surgery as a new born, i now have a pacemaker. I am sure your son will have amazing character some day. I can't imagine the pain you have been through as his mother, I hope you guys know that you aren't alone. And some of us have health complications very very young, but enjoy everyday we have because it is really a gift. I hope your son knows he isn't alone, I am sure not very many 14 year old understand what he has been through. I wish you and your family comfort for I am sure the difficulties have been termendous. May we cling to God because He is all we have left.
hang in there
Child
by notnomalteen - 2008-05-08 05:05:53
I am 18 and i get where your son is coming from , when hes is scared it will shock him. I too have an ICD and also had open heart surgery. You should ask his doctor for some names of patients around his age who have a similar condition willing to talk to him. It will make him feel like he isnt the only one with this.
Learned helplessness
by joy1 - 2008-05-14 07:05:46
I was saddened by reading your post. Your right, a child shouldn't have to go thru what your guy is going thru. As adults, we forget that children are going thru the same things. The thing is that inspite of being "grown-up", we all deal with getting shocked in much the same way. We can be told what it feels like to get shocked but till it happens, we don't know; the doctors don't know, most have never been shocked and if they are they can get away from what is hurting them, we can't. It sounds like your son has developed PTSD from being shocked. I'm there. I experienced an electrical storm, 10 shocks in 20 minutes and I had felt fine.I was fine actually. Now, if I receive a static charge from touching something, I will start crying. It's so scary not knowing when your going to be shocked or as I say "hit". It's like walking around and going about your life when some invisible person comes out of no where and hits you. At the time, it makes no sense. Even later when it's known why you were hit, it doesn't take away the fear. The psychiatrists have found the very best therapy is to have the devices turned off for a period of time but when that can't be done; both talk and chemical therapy are generally needed in order to deal with the anxiety. Support groups like this forum or www.zappers are good if a local group can't be found
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child with icd
by VonnieVern - 2008-04-04 08:04:34
I don't really know what to say except that as a mother I'd much rather deal with stuff than have my children go through it. I imagine you may feel the same. You and he need support and/or therapy to help deal with all this. I will pray for you.
Vonnie