[Busymommie]

Over the last couple of weeks we have been having AED issues, mostly due to an increase in her partial seizures that Dr. P increased her Topamax, after nearly 6 weeks she was still having a bad taste in her mouth and was still really sluggish. So as my previous post about her meds stated we started on Keppra and are reducing her Topamax-

Since last Friday she has had more big seizures than I care to count. She is having about 3 a day. On the positive side she is having less of the partials. Not really the trade off I was looking for though.

Monday I talked to Leigh and she said that we needed to add a 1/2 of a Keppra in the evening and still continue reducing the Topamax. Which we did, Wednesday night she had 3 big seizures in less than an hour and a half, one lasted almost 7 minutes with diastat. Then Thursday morning she had partial while having breakfast and two more at school. I called again and when some new nurse called me back she said that Dr. Parrott wants her to INCREASE her Topamax to 200mg twice a day.

I know that can't be right.... I mean how can it be?

She was having issues on 350mg a day. The nurse looked at it again and read it off to me, that is what it said.....
I refused to give it to her at that dose when we were down to only 275 a day. You can't increase to nearly double her current dose like that especially on a med that she was having problems on at higher doses.

This was at 4 yesterday afternoon. She was going to check again with him and call me back. I am still waiting. I thought certainly she would have called back yesterday.


This is nothing but a vent, I am so frustrated with these seizures. I can't stand to watch Riley go though anymore. I just can't.

I wish I could understand why her seizures are so hard to control.