Donna,

These symptoms sound familiar and remind me of some of my daughter's seizure symptoms.

My daughter smelled things. She had tics... head to shoulder and facial grimaces. Vocal tics, too... just random shout outs. She had head drops, torso drops and sways, knee buckling. She had repetitive mannerisms like chewing her tongue. Her biggest seizures looked like she was passing out... she'd arch her back, she'd moan and even call for me, and her eyes rolled up and eyelids fluttered..with just mild twitching afterward. Sometimes she'd have confused, silly conversation, or act somewhat drunken/obnoxious. She also had what seemed to be involuntary twisting of her torso...sometimes she'd practically twist right out of her chair. She had awareness of that, but said it just felt really 'tight'. I think they were muscle spasms and she could not really control the twisting. It was so hard to watch all this!.

Her neurologist was not willing to say all those symptoms were directly related to seizure, but I can tell you they occured during the months her seizures first presented.... and stopped when her seizures were controlled and never reappeared. In fact, he gave me the shoulder shrug / deer in the headlights look in regard to the torso twisting and said he didn't think it was seizure related. So, whether she had seizures and tics, myoclonus, dystonia, or everything was related to the seizures... I don't know. Her only official dx was generalized seizure disorder.

Just because she doesn't show abnormalties on an EEG...at the time the EEG is done...does not mean she isn't having seizures. Of course, without the EEG there is no proof they are seizures... and we know our doctors all like proof. I hope there will be some repeat EEG's, preferably ASAP after one of the bigger events or if the events worsen...not always possible to get right in, I know.

During my daughters first EEG they were able to provoke a seizure with flashing lights. A subsequent EEG was normal, followed by one that was abnormal but did not show seizures. SO... it is all about what is happening at the time of the EEG.

I can't say for sure these are seizures, but I agree with you that they sure do sound like seizures.

I know at the time this was all happening to my daughter, I did find that various nutritional deficiencies can cause some movement related symptoms (like tics, myoclonus, and dystonia~ as well as seizures) and I'm sure there are many other diagnostic possibilities, too. Might not hurt to check in on a Tourette Syndrome board, either. I know the people there were helpful to me, as I tried to understand the difference between tics and seizures.

I wouldn't want to accept the total answer is anxiety, though.

Cara

Thanks Cara

I totally agree. And I'm hoping she got into another specialist the
other day. She has had 3 EEG's and one VEEG that was a week long.

But I don't plan on letting her mother give up, but neither does she,
but she also has lots of things herself going on so its really a mess.
And called to get her in when its happening is almost impossible.
THey are on state insurance and some of the worse time, the stupid
state was changing their insurance and no one would say who had them,
so they weren't exactly covered.

So even then they couldn't get seen.

So I'll be back to update.

Donna