ICD in children

My daughter is getting an ICD. She is only nine years old. I am worried about her quality of life and the risks. I don't know if I am doing the right thing.

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My son Cameron received his AICD on April 4th. As you might know, he received it because he has long qt and has had a cardiac arrest event. With the Grace of God he has not had an event since, and is doing very well. As for the AICD itself, live a pretty normal life. Her quality of life will not change. Yes there are restrictions, like no more contact sports, stay away from some amusement rides etc. But most often people live just a great life. If you meet my son, you would never know that there had been anything wrong with him, unless he pulls up his shirt and shows you his scar. (He loves to show people his chick magnet). We went to Seabreeze this weekend (Amusement Park) he stayed away from the big rides, but still had a blast in the water park and the more gently rides.

Cameron eats, sleeps, drinks, plays, learns and does everything else NORMAL. You are making the 100% right decision, the alternative is not exceptable. There will be a recovery period, however when that is done (It does not take long) your child will be fine. Plus you have protection now!!!

Please feel free to ask my self or my wife any questions you might have!

Mark and Rebecca Knowles

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My son was 15 when he suffered his cardiac arrest. He's now 22. He was a wrestler and had just passed his first degree black belt in karate. After many tests he was given an ICD because they could not determine the cause. He was shocked a few times before they adjusted his medication. He's now on 60 mg of nadalol a day. He just had his second ICD put in. Aside from being hand searched at the airport (they can't use the wand on him) no wrestling or contact sports, (he was able to get his second degree black belt) no one looking at his life would know his situation. He works out, he attends college, he drinks, he dates and has sex. He has some difficulty with remembering some things, but I don't know if that is from the anoxia he suffered during his SCA or from the meds. Bottom line, aside from the meds and surgery to replace his device every 7-8 years his life is totally "normal" whatever that is. Without the ICD he could die. The choice was easy for me.

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You are making the right decision! My daughter Sami was 8 years old when she had her icd surgery. She just turned 11 and has not had any "episodes" since her surgery. You will be in my prayres!

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My 4 year old son received his AICD on April 4th this year. It was the hardest decision that my husband and I had to make but we glad we did because it saved my son life after he went into cardiac arrest 4 times within less than 4 hours. Since the surgery, he's been doing fine. Yes! there are certain restrictions that need to be followed to keep him safe especially being that he's only 4 years old but it's worth it because my son is alive. Right now, we are just taking it day by day with God's help.

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My son was diagnosed with CPVT last week and our Cardiologist is choosing to not put in the ICD for now until he is older. I don't understand. We have been told it's because of age! I am reading these posts thinking why did they put the ICD's into these other children then? Can anybody help me?
Sarah. Confused and upset mother.

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my son was diagnosed last week with cpvt. His doctor is choosing to increase the medicine and to not put in the defibrillater yet. Did they go this route first with your child? Was there alot of attacks with her? I have been told because of my sons age that he would rather wait until he gets a little older due to growing etc and complications that arise with that with the device. I am very confused, maybe you can shed some light on it for me. I would appreciate this. He is nine also. In a way even though it is scary I wish they would just do the ICD now in case of another attack.
Thankyou sarah

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Hi, Latteda
My daughter has prolonged qt syndrome. She has had 4 episodes of passing out. They put her on a beta blocker to see if that would help. She had another near episode while on the beta blocker. That is why they said she is at greater risk. They want to put in the ICD as a last resort. If the medicine works it is a lot better because your son wont have to go through surgery. Hope this helps a little bit. You are in my prayers. God bless you

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Here's an article on a study done recently to explore the use of ICDs in children/adolescents: http://www.medscape.com/viewarticle/574323

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