Well, we are officially in Keppra Hell.

I spoke with Leigh (Dr.P's nurse) yesterday due to a very rough weekend. Saturday evening Ri had a Tonic Clonic, the first in a while that was not due to a fever or being sick. Sunday morning another shorter one, Sunday night 2 of them, one nearly 5 minutes long from the time I first swiped the VNS and ended only after giving her diastat. Monday afternoon she had one of her regular ones in the van on the way to therapy, then another at the dinner table. Thankfully the VNS stopped those as they both were pretty intense complex partials and could have become ugly quickly. (kudos to the VNS for doing something) Leigh relayed that Dr. Parrott still wants her to continue to decrease the Topamax, when she told me that I admitted to her that I was only reducing by 25mg a week, not 50 and that she had JUST gotten down to 275mg , this week she would be down to 250mg. She said Dr. Parrott wants her on only 200mg a day and when we get to that point to stop decreasing it. He increased her Keppra by 1/2 a pill at night, which puts her on 675mg a day.

I hate coming down so much on Topamax it has been the ONLY seizure drug that controlled her big seizures. I am not sure I am going to have the guts to take another Topamax away tomorrow evening.

The Keppra is contributing to her attitude as well which is very Unpleasent Not as bad as last time thankfully. Maybe we will make it through and it will level off a bit.

We finally have her appointment for the Neuropsych testing. November 13th we take her back to Charlotte to see Dr.Ewert, then on the 27th Robert and I will go alone to see him and get her results. I really hope that this testing gives us some idea about how to better meet her educational and developmental needs instead of tossing me into a pit of despair. I know no matter how much I tell myself that the numbers don't mean anything, she is still Riley just as before we saw them, it still stings.

~back to the keppra

How much is a "typical" dose? I am trying to see where Dr. P is headed with it. I do hope it will help, but at what dose should we expect to see some results? Where is 250mg in the am, and 375mg in the evening on the typical dose scale?

just throwing this ot there for thought...but is it wise for tesitng her until she is level in her titrations? you may not get the accurate picxture until she levels off on her keppra and levels off on the topomax. Just been our experience in the past.

She should be at the dose of Topamax he wants her on well before that date, it is nearly 2 months away.

Denae, We never did see results with Sammy on Keppra, however at his highest dose while we were trying to gain seizure control he was at 400mg/am and 400mg/pm. He was about 35 pounds at the time.

Becca is 47 pounds and "maxed out" at 750mg in AM and 750mg PM. We saw no seizure control with each increase starting at the same dose Riley's on now. We were on only Keppra though. We did see behavior get worse with every increase, then level off SOME.

We are titrating up on lamictal now - and then off of keppra. . .hopefully be Christmas. So far, still not controlling siezures.

Keppra seemed to work for us for 3 months and then boom. Becca found a way around it obviously - no matter the increase.

Yuck.

Hugs,
Kathleen

We are having some seizure control with Keppra right now. Adam has gone from 4-5 30/45 sec. major motor seizures a day to maybe 1 every other day. His threshold is definately different and we can "divert" him from having a major seizure more easily.

He is on 2 ml/3 times a day, which is 200 mg / 3 times a day...we are having Adam's levels checked soon and may even raise that dosage some.

Our Neuro. is very realistic and knows we may never get total control, he has actually said that will probably never happen. I asked him about the body building up a tolerence against an AED and he says that yes, that does happen.

Seizures SUCK!