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I would be intersted to hear how common it is for people this age diagnosed with cpvt to get the ICD as our doctor is putting it off for the time being due to our sons age. Any help out there?
Sarah
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Diagnosed with CPVT aged 9
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- By emily_anne3
- Posted October 14, 2008 at 11:39 am
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i have cpvt also. i was diagnosed with it when i was sixteen. my doctor put the ICD in immediately, but now i have a new doctor that is saying he doesn't think it was really needed. mine personally has never fired because my medication keeps the disease under control. but i have heard of more extreme cases where an ICD is needed.
- By Mars
- Posted November 3, 2008 at 9:17 am
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Our son started fainting at age 9 but wasn't diagnosed with Long QT until age 12. The doctor suggested we implant and ICD, but that seemed so drastic to us that we waited - he was on Beta Blockers. But, at age 16 we almost lost him! He went down at our house - luckily we had people there to perform CPR - but what if he had been out with friends? He was in ICU for several days and we didn't know if he would be brain damaged, etc. It took a couple of weeks for him to be able to speak correctly. Then his math skills were not what they were before.. But everything else returned. I wish that the doctor had been more insistent about the ICD - I wouldn't want anyone to go through what we did with our son. BTW - he has since been re-diagnosed with CPVT. Good luck!
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