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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!
- By latteda
- Posted November 5, 2009 at 4:40 pm
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thank you. It has been a crazy summer. when brandon went for his 6 month check up in May he failed the stress test so they decided to put the icd in. I have to be honest as emotionally draining as the summer was i feel so much better and more at ease knowing that he has this. So far no shocks. He has had his nadalol increased however now from 60mg to 80mg because when he has been working out his heart rate was going up to 180's and the icd is set to shock at 220. He has had some issues with the higher dosage like moodiness, headaches. (sometimes it's hard to "allow" for this and be patient as i am wondering if the moodiness is the medicine or his age sometimes. I just sit him down and explain that he has to try and stay calm when he is feeling like this but at the same time my husband and myself will not tolerate that disrespect so he has been punished for these actions in the form of living without those comfortable privilidges our children so love. (tv and video games). Anyway, i just wanted to thank you for your reply and apologise for not doing so sooner.
thanks again.
Sarah.xx
- By 3Monkeys
- Posted November 18, 2009 at 12:31 am
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Our son, age 11, has been diagnosed with CPVT this past month. We are waiting for the results of the genetic testing. It has been a terrible time, as hockey season just started and he was told "no more competative sports". How have others adjusted to this total lifestyle change? Has anyone had counselling for their child?
We have two other sons ages 8 and 6, but they have not had any fainting spells, and are just as active hockey, soccer, running.
Am I reading correctly that some medications/beta blockers could allow my son to participate in some sports?
Do these meds affect school performance - being tired, no get-up-and-go?
I realize we are lucky to have caught this and he is still with us, but I have to wonder just how much testing should we do?
Any info anyone can provide would be greatly appreciated.
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