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From: marylou and john
i am a mother of a 5yr old boy who at 14mo was diagnosed with epilepsy. as far as we can tell from all of our experience and research ... steven now experiences vv reactions to severe pain stimuli. i am not a doctor but from all of our info from CHOP (childrens hospital of philadelphia) and dr sapin (pediatric neurologist at CHOP) as well as Barbara Beck (dr sapin's hands on nurse practicioner) only a true seizure is followed by a period of sleepiness and loss of memory.
we are right now going thru exactly what you and your daughter are. steven has had two vv episodes in the last 7 weeks. it has been 18 mos since his last hospital stay. we have done everything drs have rec except we have thus far chosen to go against medical advise and not medicate. steven we believe had a few true seizures between 1 and 2yrs old. He was like a "drunken sailor" after. He was staggering around and could not focus and eventually slept for up to 8 hours afterwards. we have had 1hr , 24hr and 48hr EEG's, MRI, EKG'S. Nothing has ever shown up anywhere.
We are now faced with Steven starting kindergarten and for the first time he fell on his face during his vv episode. This is the main fight that we have had with drs. They say that we are negligent and in denial and he should be medicated. We know we should call the neurologist but we also know that they will want him in the hospital for an EEG again. I am going to talk to my pediatrician for more advice.
Again I am not a dr but I think you should have your daughter evaluated by a pediatric neurologist. Steven can remember everything before, during and after his vv episodes. Your daughter may be experiencing drop seizures. If you get any info on the vv episodes or need any info from me my email is COOACH1@comcast.net GOOD LUCK Our thoughts are with you. This is a very difficult thing to watch as a parent. I feel very helpless. You are not alone.