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I would like to hear from anyone who has suspected or confirmed CPVT.
What are your symptoms? How was your CPVT diagnosed? What is your treatment plan?
I have symptoms of both CPVT and LQT, and would like to get genetic testing, but my insurance will only approve one or the other, not both. Any replies might help me understand the differences between these conditions.
My daughter, who is 15 yrs old, went into cardiac arrest on 4/15/09 after a softball game. Was revived with an AED by anoff duty firefighter. SHe now has an ICD and on betablockers. Was diagnosed with CPVT andpossibly, ARVD. Waitingon clearance from insurance company to take the test as well. Hard part for my daughter is that they have told her no softball and volleyball. That is what has beenthe hardest part for her.
Hi! My son was diagnosed with Long QT at the age of 12 - after 4 fainting spells and finally a treadmill test. We were lucky to happen to know someone who worked with Dr. Ackerman at the Mayo Clinic who was/is doing a big study on the genetic mutations for Long QT.. well, it turns out that my son's mutated genes were recently identified and he was CPVT instead of Long QT. I really can't tell you the difference as far as symptoms go. He had fainting spells (lucky for us so that we could find the problem) and also did have a near fatal experience at the age of 16 - that's when we implanted an ICD. Hope you have one! He is now 24, on a Beta blocker (but recently reduced that since he had no incidents in the past 5 yrs) and is extremely active in sports.... men's softball team, tennis, basketball, golf, etc. He hasn't had one "shock" until this past weekend when it was found out that one of his leads was not working anymore. After a quick procedure, he is back to normal and doing well. Hope this helps!
Our 14-year old son was diagnosed with CPVT after suffering a cardiac arrest at school during recess. He was revived with an AED and now has an internal defibrillator. He is on betablockers and a calcium channel blocker. Because of the abnormal rhythm recorded on the AED device, the doctors were sure that he had CPVT. However, our whole family underwent genetic testing and he was the only one with a genetic mutation indicating CPVT
Hi!
I am an employee of genetic testing company called GeneDx. My suggestion from our experience is that you should go for Long QT genetic testing first, and if that comes negative, then you should go for CPVT. Insurance shouldn't give you hard time if you go in serial order instead of getting tested for both at the same time.
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