I have never posted a question before so I hope I do this correct and explain myself. My son is now 12 years old and started passing out again. This started when he was 4-5 and he was initially seen by a neurologist because of tics. Upon describing what would happen to my son the neurologist said that we could have a serious problem with him passing out like he was and we needed to get to the cardiologist asap. He also said we needed to rule out Long QT (which I am almost positive we never did) . My son would say he hurt himself and all of a sudden turn white, become unresponsive, faint and sometimes look like he went into a seizure but I was told it wasn't a seizure, at times his heart stopped. The intervals were about 6 months apart. Anyway we got into see the cardiologist and she was going to send us for a holter monitor because the ekg read fine and he looked and acted perfectly normal (he would usually bounce right back after these episodes but he definately lost conciousnesss). As we were leaving her office he hit some part of his body and went down. It looked like he was having a seizure and the doctor was telling me not to worry he will be fine. They walked him over to pediatric cardiology icu where they monitored him for a few hours. He was fine - laughing, playing, everything like a 5 yr old would do. Doctor came in and said they were going to admit him; she got very teary eyed and said she thought that his heart had stopped and was on its way back up when she got to him. She had been on the phone with all her colleagues all morning and we may have to put a pacemaker in. Condition called Cardio Inhibitory Syncopy but he has a rare form where his heart stops (so they think at this point). They admitted him and after taking blood he passed out again and they got it on tape where his heart stopped. We got fast tracked to the director of electrophysiology at a different hospital. His heart is fine - perfectly healthy; it is the electrical messaging system of his heart that is the issue. The concensus was not to put a pacemaker in at this point because the intervals of these episodes were like 6 months apart, he was so young, there was no evidence to support that the heart wouldn't start back up and he would probably grow out of it. The doctors seemed fine with this and I was a basket case! There was two incidents where this looked like seizures - he was down on the ground convulsing, I call 911 and they take him and they can't find any evidence of seizure. Over the last few years there was no episodes of passing out though feeling faint quite often. Like I said, my son is now 12. He not only has severe tourette syndrome, adhd, ocd, major mood disorder but post tramatic stress disorder (won't get into this now). Last December he started passing out again and they saw on tape where his heart stopped again. Hospital kept him for a few hours, it's stress and we are on our way (of course I am telling them it is not a problem - the doctors assured me). But, now, it is too frequent!!! This is the same stuff again - you just don't forget it. He had these fainting-seizure-like episodes twice this week and I know something is wrong - he actually lost a full day of memory. I took him to the hospital - ER Doc thought he had a seizure and we needed to get back to neurologist. Neurologist this week said he thinks this is all cardio again (electrical messaging system of heart) - we need to get to the cardiologist. He said we will do the 48-hr eeg (which will be tomorrow) and we have an mri scheduled for Thursday. He said the priority again is the cardiologist. This is exactly what happens when you see these young kids die of heart failure out there while they are playing football or track. There is always a warning - nobody is paying attention. So, we will get together in 6 weeks and go over the results of the tests. I was just getting the ECG report from my file so I could call a cardiologist tomorrow. My friend was sitting with me and she said it looked abnormal and I was told by the ER Doc that it was perfectly fine. I looked at the top of this report (dated 09/25/08) and under the Pediatric ECG Analysis it states on the first line, "normal sinus rhythm with sinus arrhythmia" second line states, "Borderline Prolonged QT". Now, I just saw that and now I am really scared because I just looked this up again. All of the symptoms are the same as my son's. All of this in one place...... I know the phrase "cardio inhibitory syncopy" is a normal phrase. I was told my son had a rare condition of this with the difference being his heart stopped. Could this in any way be QT verse this cardio thing or could they be the same? When I looked up the QT it was excactly the same thing I was told except with a different name and rare condition. Does anyone have any advice? I know I need to get him to the cardiologist as soon as possible and then possibly electrophysiology again? Thanks anyone for your help!!
Your son definitely needs to see an electrophysiologist experienced with Long QT Syndrome. Check out the www. sads. org (no spaces) website for doctors in your area. Many people with LQTS are diagnosed with other things. My son also had seizure-like faints that weren't diagnosed properly for quite some time.
Is your son on any antidepressants for his other conditions? These also can prolong the QT interval. But he needs to be thoroughly examined.
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