SADS Foundation :: Sudden Arrhythmia Death Syndromes Foundation

The testing is expensive- but 70% I believe refers to the fact that they can determine what type of Long QT your son has. Once determined it is 99.9% accurate. There is a chance that he has a form that they have not been able to identify. My daughter was tested just 4 days prior to her dying from anoxic brain injury (2/08) as a result of an arrhythmia incident that occured Christmas morning 07. They did identify her type and because of that the rest of the family has been able to test from the finding and her son, her 2 remaining siblings and myself are all taking Nadolol because we to carry the mutation. 70% chance of finding the mutation was worth it for us, and has given us much more peace of mind that we don't need to loose more family members to the "unknown"

This question is to Karen who shared her story of her daughter. I am so happy for you that she survived her cardiac arrest. Would you mind sharing more information regarding the circumstances of her cardiac arrest? You mentioned she was taking beta blockers for 3 years. I am wondering if she was taking them at the time of her incident? Also, what sport/activity was she doing at the ymca which may have led to her cardiac arrest? Also, which type of LQT does she have (1,2,3?). I am still struggling with decisions on how involved I should get my two boys (who have Long QT1) in any exercise related activity (sports). Currently, I am avoiding all of them out of fear but they are very unhappy and would like to participate in sports. They are currently taking beta blockers. Feel free to repond via this message board or my e mail is This e-mail address is being protected from spam bots, you need JavaScript enabled to view it . Thanks. Cindy

Hi to all. I have three children, two who were diagnosed with LQTS type 1 in January '08. We've done the genetic test. They are both on beta blockers and restricted from competitive activities. My oldest is a 15 year old girl who is an extremely talented ballet dancer and had to quit. She had very attainable dreams of dancing professionally. This was the hardest thing to let go of. But she has done amazingly well - she taught the 'little girls" at the ballet studio and has kept in touch with her ballet friends. She's also learned to try new things and sees them as opportunites that she wouldn't otherwise have had. My youngest is an 8 year old boy who loves every sport. He luckily wasn't as involved in any one sport as she was, so we as parents are just steering him toward golf and other recommended activities. To those of you who are struggling with this very difficult situation, I say stay educated. The more you know, the more you can help your children. We've cried many tears over this whole thing but losing a child is far worse than losing a sport.