I hate it when I forget to ask two of the major questions I wanted to ask, but this time I did. I got so wrapped up in what he did say I forgot to ask about the sleep issues and about the increase in those left sided seizures.

Dr. Parrott lowered her VNS back down, I let him know that anytime she gets swiped and is conscious it hurts, he had no problem in dropping her output a little bit. What I also forgot to tell him was that I felt like that particular setting was partially responsible for the enourmous increase in seizure activity. But it is down now so we will see.

Her Topamax will stay at 350mg a day... I had hoped he would reduce it a little, I am worried about her NOT sweating, and the acidosis, she is still teetering at a low level.

We talked about her regression and he seems to really feel like it is due to "trauma" or "stress"... the only stress in the last month is school starting. He asked about car acciddents, parents fighting, loss of a pet, -no, no, and no.. There is nothing, the only thing that would support that theory is school starting, but she has been pretty excited about going back. So I don't buy the stress or trauma theory. She went through a regression about 2 years ago and he suggested the same stuff, I stand by blaming it on seizures just as I do now.

He suggested we have neuro psych testing done to see what is going on in her brain. So we sit here waiting for the appointment day and time.

I know that all of us want to know what our childrens potential is, so I asked what I should be expecting and that I felt part of her behavior problems are due to expectations that are to high or are to low. If I know developmentally right where she is then we can as a family adjust our expectations. He said the neuro psych could give us some insight.

Questions-

*what is neuro psych?

*what do we do with the results? What does it tell us?

*can it help determine where her seizures are affecting?

Another "I don't know what I'm talking about" reply. In the back of my mind I have this vague "neuro psych evals are really cool" feeling and if our neuro mentions it for Tom we should take advantage of the offer. I keep thinking they tell you about strengths and weaknesses in your learning processes? What you need to work, and what you do well? Like I said, I'm a bit fuzzy on the details.

Have you posted over on the Epilepsy forum? I keep thinking that's where most of my neuro psych info comes from (what little there is.... But, hey! I'm pretty sure about the "neuro psych evals are really cool" feeling.)

I'm glad he dropped the VNS setting. Hope it reduces the seizures Riley's having. After the little reading I did on Topamax yesterday (posted on your other thread), I'm a little concerned with the levels, too. Sorry I don't have anything else to offer. (((Hugs)))

The neuropsych evaluation will check her cognitive issues. Remembering numbers or words that the psych tells them. There are no wrong or right answers. I have done it three times now, once pre-deep brain stimulation and twice post-op.

HTH,
Suzie