Nervously, very nervously, but experimenting, nevertheless. I've pretty much given up the hope that I'm going to be able to wean Milk off phenobarb, possibly EVER. As desirable as that would be, I don't think that it's possible, and to continue to hope for it and to try to decrease again is just too risky. If the dosage he's on now can control his seizures (hopefully long-term), then I just have to accept the anorexia and the wobbliness and all the other side effects as inevitable. It makes me sad. However, I do think that maybe it might be possible to reduce the amount of Keppra (generic) he's getting, since there was the tiny increase in phenobarb that seems to be holding him. I'm antsy about it, but I think it's worth it. Because almost all of his seizures have occurred in the very early hours of the morning, I'm thinking that the most medication needs to be available to cover that period of the day. Plus, he has always been sleeping when he had a seizure, and during the day, he's awake much more of the time. So far, it's been about two weeks since I reduced him by one Keppra "chunk" - yes, a very imprecise measurement, but no dosage he gets is ever exactly like the one before or the one after..... I started at first to take away the chunk from the afternoon (6PM dose), but thought that maybe it might be better to try the AM dose instead, since he does get the additional phenobarb AND the big dose of Keppra at 2AM. And that seems to be working. (I'm afraid to even write this.) Two days or so ago, I removed a second "chunk" dosage, so now, at 10 AM and at 6PM, he's only getting the 1/2 and the 1/4 Keppra pills. I want so much for this to work, and I'm so afraid it won't.
Just in case, for some reason, MAYBE IF - someone else out there needs to give Milk his medication - here's his schedule as of today, June whatever, 2008:
All amounts are estimated, sadly.
10 AM
8mg phenobarb (1/2 of 16 mg pill)
180 mg generic Keppra (1/2 and 1/4 of 250 mg pill)
6 PM
180 mg generic Keppra (1/2 and 1/4 of 250 mg pill)
10 PM
12 mg phenobarb (1/2 and 1/4 of 16 mg pill)
2 AM
210 mg generic Keppra (1/2 and 1/4 and 1/8 of 250 mg pill)
I ordered the 500 mg generic Keppra pills this week from Canada. I am hoping that they will not be any more difficult to chop up than the smaller pills. The cost was enormous - $274, but I got free shipping and a $10 discount for having an order that was more than $250. Every little bit helps, I suppose. I can't picture exactly how much larger the 500's will be. I have a new pill chopper than I just hate because it jiggles the pill-to-be-chopped just before I click it shut, and the pieces NEVER come out the same size. In fact, I'm getting quite a collection of unusable little bits of Keppra; maybe I can sort of glue them together with Pill Pockets and make up a few regular size doses........
My fingers are crossed. And my toes, and ankles, and eyes and whatever else is flexible enough to move around.
