Non epileptic Seizure, Physical cause?
Hi all. My 16 yo daughter has a host of medical issues but was recently hospitalized with intractable pain and left side weakness. A day in to the hospital stay she starts having seizures during her sleep. About a month ago while in another state she was diagnosed via EEG with Complex Partial Seizure Disorder. We had never witnessed a seizure but she has had several falls over the years so we just assumed this accounted for all the falls. I also assumed when this recent episode started, here come the seizures she was diagnosed with last month.
So, while in the hospital this week she had about 70 seizures in a day and a half. 45 of them were caught on video monitored EEG. The neuro came back saying non epileptic seizures. I do not believe these are pseudo seizures. I think there is a physical cause OR the EEG did not pick them up because they originated deep in her brain? is that possible? I have never had a reason to research seizures until now!
This is what hers are like: usually preceded by a strong chemical smell, sometimes a funny feeling in her stomach. Most actually started shen she was sleeping though. Her left hand, always raised up slowly to her face or chest, hand claws up, she mostly hits at her face repetitively with a clawed hand, sometimes her chest, her body is very rigid especially her left arm and hand. Her right arm remains completely relaxed and pliable. Sometimes she arches her back or neck. She is grunting, sometimes saliva foams out her mouth. it seems like breathing is very labored or forced. Eyes roll back in her head and move side to side, sometimes lids flutter slightly. most of the episodes lasted 30 seconds up to 2 minutes. Some times the episodes would go on for about 15 minutes in total....30 second seizure,,,,,20 second break and then start up again.....one minute break, start up again....on and on. When the episode is over she slowly relaxes, her eyes are glassy, she is confused and can't speak for a moment. when asked her name it takes a while to get an answer. She finally comes to and can answer but speach is difficult for about a minute. She is then VERY tired and lays there for a while.
The EEG did show "slowing in posterior temporal lobe" but this did not coincide with any of her episodes so they are not calling them seizures. The doctor that did the original EEG is in another state, we saw her for another medical condition. She told me we need to go to en specialized epilepsy center and request a PET scan. We were already at a level 4 epilepsy center. I requested a PET scan and they acted like I was crazy, said it wasn't medically necessary and sent us home! Luckily my daughter has only had one since coming home and we are keeping a close eye on her.
I know I can get some good advice from you all....should we just accept the pseudo seizure diagnosis or keep searching?