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From: Samantha
My 9 year old son has had 4 events (age 2, 7 and 2 in the last month). He has passed out and within seconds his whole body stiffens and he starts 'twitching' in his arms and legs. After 5-15 seconds of this he goes completely lifeless. It then takes anywhere from 5-20 seconds for him to open his eyes. He is extremely exhausted and his eyes are very puffy for hours afterwards. The first three incidences have been in response to fear or blood stimuli. This last episode he was sitting at our kitchen island eating breakfast with his friend with absolutely no negative stimuli. He is in the middle of testing. The EEG ruled out epilepsy and the CT Scan did not find anything. They are now ordering an EKG, MRI and blood tests (which we are all dreading). I refuse to accept this as just VVS especially after this episode with no adverse stimuli. He did have a traumatic childbirth, where his heart rate was dropping. I attribute this rough childbirth to the fact that he was a breech baby who was manually turned in my abdomen at 38 weeks and when I was finally induced at 41 the doctors were basically screaming at me telling me my water had broke at some point and I never came in. I believe that when they turned him they damaged my placenta - thus I asked to see my placenta after having him and it was not red as it should be but had brown spots all over it indicating it was dying. I dont know if there was some damage to him then (ie, denial of oxygen causing some scar tissue on his brain (which has been known to cause seizures)). I cannot accept this lackadaisical term of VVS from the doctors. I am completely freaked out having to watch my son go through this. I worry about his whole life - do I let him go bike riding, what happens when he drives, what about being nervous for his first date, can he ever climb a ladder? There has to be someone out there who knows more about this (cause and cure). I am tired of hearing doctors tell me "you probably thought he was having a seizure, but he really wasn't". Does anyone know any doctors who really have studied this and can help me??? Samantha