Sunday, January 9, 2011


Lisbeth had dinner with us last night at her favorite restaurant, China Rose. Lis has gone through so many changes lately, the most visible being pronounced weight loss. Medications had caused weight gain and bloating the past few years, not a good side effect. When Lisbeth was very young, she was emaciated. So we'd lost track of the real Lis as far as size. We think that now she is where she is supposed to be, around a size 6. Lisbeth had a loss of appetite while on Keppra, so that, combined with taking her off Vimpat last spring (one of the drugs that caused weight gain) resulted in dramatic weight loss. Now we want to be certain that she doesn't lose too much weight! She is eating better since off the Keppra, so we have fingers crossed that she's hit a plateau.
Lisbeth's psychological state is improving as well. Her helpers report that she's like a new person off Keppra - more positive, relaxed, and energetic, even though she's having seizures again. She told one of her helpers that the old voice in her head that was saying "getting dead" is going away. She said, "It's going in the trash. Now there is the new sweet voice." (Lisbeth continues to blow us away with her insights...)

Things can still change on a dime - last night Lisbeth was fine for the first half of dinner then suddenly reared up out of her chair panic stricken - saying she needed to go home with us right that minute. We tried to gently re-direct her, but she remained agitated, and started to feel like she was going to have a seizure. We used her magnet, and finally had to administer her PRN lorazepam. We went back to her house, and it took a couple of hours to calm her down and settle her in for the night. I called her house this morning, and her helper reported that she is clear again and in good spirits. The up and down and back and forth of it. This is how it is. It will never be perfect, but all things considered, for now, it's a whole lot better.

Tuesday, January 4, 2011

The Dance

Lisbeth and her Dad dance a waltz in her big brother's living room...

Lisbeth with her four siblings (and one little sneaky nephew :^) She enjoyed a good night just after we decided to completely stop the Keppra last week. Even on the lower dose, Lisbeth was experiencing perseverative thoughts about death and felt certain she was dying. She is now in the midst of a rugged seizure cluster. We are not sure how we will proceed from here - there are no new drugs out there that can help at this point. We are praying that Lisbeth will emerge from this recent flurry of seizures and enjoy some good days, and are willing to accept a few seizures a month in exchange for a better quality of life. The seizures tend to clear the air like a good storm. Did you know that electric shock therapy was designed after seizure activity? Lisbeth's psychiatrist told us this when suggesting that Lis is possibly better off having a few seizures, rather than none at all.