Good to hear from you Amanda,
I'm Janet, mom of a 16 yr old son who had a cardiac arrest at the age of 13. He's our miracle. He's diagnosed with a rare condition called CPVT and has an ICD since Nov. 2007. We know where you're coming from when you say your son doesn't want to talk about his heart condition/ICD. Zack would not-did not want to talk about his condition either until about 2 months ago. Best advice is to be patient with your son and supportive. The teenage years are very hard for "normal" kids let alone one that has a life threatening condition. About 6 months ago we finally found a counselor that connected with Zack. Since 2007, we met with 2-3 other drs unfortunately Zack was not ready to deal/cope with his problems and was in what we called a "denial" stage. When the time is right you'll know when your son is ready. I''m not sure where you live, but there may be a heart/ICD support group for kids. Have you checked with your doctor/nurse? It may be too soon for your son to read/respond on this site, but if he has questions, my son would probably be able to email back and forth. Once again, just be ready. Research and have information available for when he is ready for your advice. This board/family has been a great help to us. Their knowledge/advice is right on target because they have the personal experience. Ask any question and answers will be forthcoming. Be strong!
This is a forum for parents and kids with ICDs. Discuss issues unique to parents and kids, or just hang out with some newfound friends!
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