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My daughter is 15 years old and recently diagnosed with Long Q-T. She has been put on betablockers and given no restrictions. I would like to hear from other parents about their experiences with teenage children with this condition.
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My son is 14 years old and was diagnosed with long QT this pas summer. He is on beta blockers (Corgard) and was given significant restrictions to include immediately halting playing competitive soccer (which has been his life/social circle/etc since he was a young kid), no PE at school, no alarm clocks, no rollercoasters, no playing football or basketball w/ his friends, etc. We had to make sure the school nurse knew about it, etc.
Our family (including my son plus my younger one who is 11) just recently completed CPR training to include learning how to use an AED.
Thanks for your response. My daughter is also on Corgard. As I mentioned she has no restrictions, which I am grateful for and yet a little nervous, because it seems most people are restricted. She is asymptomatic and there is no family history which seems to be the reason why she has no restrictions at this time. Does your son have symptoms? Do you have family history? Thanks for anything you are able to share?
My son is also asymptomatic. The only reason why we know about it is that the cardiologist (who we see every 3 years for an insignificant heart murmur) decided for the heck of it to do an EKG. (I think it's a God-thing myself that we even found out about it. A blessing to know now rather than later.)
The EKG showed it immediately, and then after confirmation w/ a stress test EKG and holter monitors, he was put on Corgard. We immediately had the rest of the family tested. My other son, my husband and I are all OK, but we found out that my sister has long QT and my mom is borderline. My sister has had a couple of symptoms when she was a teenager, but we always thought they were seizures. I've read that girls typically have more frequent non-fatal symptoms and boys have fatal symptoms. I have no idea whether that's true.
I don't understand why your daughter has no restrictions. I don't know if our doctors are overly cautious or if they recognize that my son needs restrictions since his level of play is so competitive or what... but I'd also be nervous. We've seen two cardiologists and they both have repeatedly said, "we don't want his first symptom to be his last symptom."
We've also been told to avoid all of the medications that tend to prolong QT wave. Did your doctor tell you about that? Those are the ones referenced on www.sads.org that link to another website.
Our school nurse was very familiar with long QT. We've had a few recent deaths around South Carolina for high school athletes because of it.
I've been told that once you're diagnosed w/ actual long QT (and not borderline) that the actual wave length doesn't make it more dangerous if it's longer. My son's is 504 at resting. Don't know if it's really relevant or not.
I was wondering if someone could explain to me what borderline qt is. My 20 year old daughter was diagnosed with long qt in February. She has never had any symptoms. How do you know your son's long qt is 504 at resting. I have copies of my daughters halter monitor and stress stess. Would the number be on that. What is a normal qt number?
Following is the link to a good article about QT intervals, who they're measured and what is normal, borderline, and prolonged.
http://www.medscape.com/viewarticle/525633
The site for drugs that should not be taken by people with Long QT is www.qtdrugs.org.
The only measurement that counts regarding the QT interval is the QTc or "corrected QT" interval. Though ECG machines measure the QT and QTc, the QTc should always be manually measured by a cardiologist who knows how to measure the QTc. The QT is "corrected" for the difference in heart rate (faster of slower than 60 beats per minute).
A QTc over 500 is considered very prolonged. If a child has a QTc of 504, it is reasonable that their physical activities are limited.
Hi Tara,
My son was diagnosed at 17. He now has an ICD and on bb's, however is living a perfectly normal life at University.
Though they do have to cope with an awful lot (it's alot for an adult to take on board, let alone a teenager), it is possible for them to live a full and happy life, while taking just a few precautions (medication and certain restrictions).
Have you had genetic testing?
Yes, she had genetic testing and it was negative and none of our families show it on their ekg's. We've now had a specialist from Rochester Medical Center say he doubts that she has it...news we want to hear and yet we still wonder.
I had my first sca when I was 14 and was diagnosed at 15 (back in 1990). I had an ICD implanted and put on beta blockers. I had many restrictions. No sports, no caffine, no roller coasters, they said I would not be able to drive nor have kids. Well here I am almost 19 years later with 2 wonderful healthy little girls, I have my drivers license, I love roller coasters (just not the ones with magnets). I am on my 7th ICD and have benn on corguard for 18 years. I have had many cardiac arrests but the unit has always saved me. If you have any ?'s feel free to message me.
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