VT and mt daughter

I need imput, the ask a DR forum is full maybe someone out there can help me. Four years ago my daughter jessica, was almost 15 she was having lots of problems with being abnormally tired, one day she passed out in the bathroom and had a siezure. The DR's ran many teat on her brain, all came back negative. The Brain DR told me that she thought is was heart related. We took her to a cardiologist they did a couple of test then gave her an event monitor. On fourth of July 4 years ago she was playing with friends out side when she got a teribble pain in her heart she pushed the button on her event monitor before she passsed out. It picked up 18 sustained beats of VT. After that she went through extensive testing, stress test, titlt table, ep study, DR tried to do ablation with no sucess. They implanted a loop recorder in her chest for 18 months and in only recorded sinus tach with pvc's. Since that day her records have been sent to UCLA medical center, Boston childrens hospital and Loma Linda heart institute. None of the DR's wanted to give her a difibulator since she had only 1 confirmed episode. She has been doing well except for the occasional sinus tach and pvc's. And the DR say try not to worry let her live a normal life dont hold her back what ever is going to happen will happen. I cant except that, I worry 24-7. Is it possible for this problem to just vanish? Is there other test or somthing else I should be doing? She wants to go away to college, I am so terrified!! Please help me, if there is another test to do or somthing I should be doing please give me advice and hope for her future..

[dmil241]

I am so sorry for all the anxiety and worry that you must go through. How does your daughter feel about all this? Does it scare her. Is she anxious about it? I really don't have any knowledge specifically about this. However I wanted to share a similar story with you. My brother's son had WPW as a child. This was many years ago before the ablations became popular to fix the problem. He would pass out in the classroom and other places. After many ER visits and doctor appointments. They discovered it was WPW but at the time there was not much that could be done.  The doctors said to let him live his life and what would happen was going to happen. He actually lived a very full and active life. In fact he became a rock climber much to his parents disaproval. He moved out to California in his 20s which was far away from his parents. He continued climbing and found out about a new way to treat this condition-abalation. He had the surgery done and is doing GREAT today.

So what is my point?-Let her live her life as she pleases. If she wants to go away to college, support and encourage this new, exciting part of her life. Encourage her to find a good doctor and keep up with her checkups and who know what things they can do to help her in the future.

[stevie_wonder]

You need to take your daughter to an Electrophysiologist EP, a cardiologist that specializes in heart rhythms. Regular cardiologists have limited knowledge in this area and can be quite stubborn about admitting it. Trust me. Our family has Long QT Syndrome and we went to several cardiologists who brushed us off and said we were fine. I researched this syndrome on the internet and learned that only EPs can diagnose heart rhythm problems. After seeing an EP we were diagnosed and treated and we are doing fine. I am not saying that your daughter has Long QT Syndrome but it could possibly be one of several different heart rhythm problems. Don't panic because most of the problems sound much worse than they are. Most are very treatable and the prognosis is good once diagnosed.

[stevie_wonder]

I would think that 470 is not borderline. I would suggest seeing an EP as well. Regular Cardiologists are NOT knowledgeable in this area no matter what they say. Everyone I know with Long QT Syndrome sees an EP. My QTc measurement on the ECG was 425 but it was over 460 when the EP read it. Mine is borderline but as you will find out if you do enough research, saying that you have a borderline QT is like saying that you are borderline pregnant. Either you are or you aren't. A long QT is a long QT, the risks are less with a shorter QT but not always. Please see an EP.

[PikaPika88]

I think my teenage time was a bit like your daughter.  I was diagnosed wpw at 15 years old.  My first symptom occured at 6 years old (Palpitation).  Then once a year with palpitation until 14.  The cardio looked at my ECG and said "Nothing Wrong".  My family Dr wants me to attend the school cross country (running 3 miles) each year.  

Finally, at 15 my palpitations non stopped and went through overnight.  Then the cardio read on my ECG and sent me to the hospital.  I was medicated since then.

I looked at my 2006 24 hour holter report.  It said my longest V-Run: 18 beats too.  Maximum HR V-Run: 144 bpm  Minimum HR V-Run: 83 bpm.  V-Run total: 28.  Max QT: 576 ms (Ch.3)  I already have a PCD, my cardio said this report didn't make sense to him.  He said my pacemaker has a build in holter monitor!  I'm only paced 70%, I'm not a pacemaker dependant and the pacemaker just sit there for an insurance purposes!

Take care.

[EL Valiente]

I can relate worrying 24/7!  I have been online constantly looking for information about Prolonged QT syndrome.  My 8 month old son MIGHT have it.  I have been reading much about it, and I found that fainting and seizures are symptoms.  They correct it with beta-blocker drugs, and most people live fine with just that.  My son shows no symptoms

[PikaPika88]

I'm confused.  QT and QTc are always in a different reading!  QTc is always about 100 more than the QT reading.  Which one is indicating  Long QT Syndrome?   QTc measurement or QT measurement on the ECG?  No doc or cardio said I got long QT Syndrome.  Would long QT syndrome has palpitation?