SADS Foundation :: Sudden Arrhythmia Death Syndromes Foundation

I have 2 children who have mital valve prolapse, about 4 years ago during their annual checkup thier pediatric cardiologist said they were both borderline for LQTS. He has since said everything looks good and ther is nothing to worry about. My son is 18 now and has had no symptoms. My daughter is 16 and has many unexplained episodes of passing out. They both had their checkups over the summer and he said everything was fine and he did not see any LQT on the EKG. On Thurday last week Dr. Mehta called my mother in law asking her to reach me and have me call him he had called and left a message on my machine
I called my machine and he left me his personal cell phone # and asked me to call regarding a new test. I called and he said he wanted my son and daughter to have genetic tests and he is sending me paperwork to have them tested. Should I be worried that they do have LQTS and they have been untreated for the past 4 years.

Hi, don't worry that they have been untreated but that they don't continue untreated if they do in fact have LQTS. I'd have them tested..anybody else in your family with it?. sudden deaths?.
the fact that your daughter has had some unexplained passing out is suspicious for the syndrome. I really hope they don't have it, however if they do, treatment reduces the risks greatly..Knowing is almost all the battle. Have them tested if you have the chance.
I wish you all the best!.
Try not to worry about the past and look forward now..I'm in a similar situation with my 2 young kids now. I have been conformed by genetic testing as having familial LQT..My children need to be tested to know for sure. they both had holters and epinephrine stress tests that were negative, but we'll know for sure with the genetic test. I have the long QT in my EKG and had sudden cardiac death 5 years ago. Now I take beta blockers and have an ICD and avoid medications that prolong the QT interval. In the meantime I treat my kids as if they have the syndrome (activities, medications, keep them hydrated, etc)..It's easier for me since they are 6 and 8..easier to control than young adults I think..I am grateful that they are still here with me and nothing happened to them while we didn't know, but now that there's a chance I'd rather know.
Good luck! and keep us updated!
Dolores

Did your kids see Dr. Mehta before?. Or why/ how did she find out about your family?.I'd do whatever she advises

Hi. I am not a dr and don't want to provide medical advise but I do want to let you know that I, along with my 2 boys have long QT syndrome. It was picked up on my youngest child's EKG after he had an incident. It was not found at all on my older son and my EKG at all. Our EKG's were completely normal. It wasn't even found on a stress test. It was only confirmed via genetic testing. I would strongly advise you to go through with the genetic testing especially if there have been fainting episodes