Now We Wait

Lisbeth in a staring seizure...

Dad waiting for the window of opportunity to administer 1 mg Ativan...

Kneeling at the Altar of Patience...

We finally did get it into her, so now she will rest and hopefully clear up...

Lisbeth's Milkweed Shrine table...

Garry and I saw Lisbeth's psychiatrist last night, then brought the orders over to Lisbeth's staff at her house. While there, we helped to give Lisbeth an Ativan for staring seizures. We are stopping the Benadryl, and starting a slow decrease of the Risperdol. We will wait and see what happens. If her rage attacks recur, we spoke about the possibility of trying another anti-psychotic once Lisbeth is off Risperdol, one that does not cause EPS: Seroquel.

Sigh.

To quote Lis, Hard to know...

Off Track, and Betting...

Lisbeth, telling her Dad about "the eyeballs hurting" on Christmas morning. Benadryl can cause dry eyes, and Lisbeth's staff has been administering eyedrops several times a day since the Benadryl increase.

Well, Lisbeth went home after her workout at the Y yesterday and had a seizure, and her aide phoned this afternoon to say she's just had another, making a total of 5 this week. Not good. We think the Benadryl is the culprit, so I paged her psychiatrist who has faxed a stop order to Lisbeth's staff. My husband and I will meet with him this evening to talk about next steps. Do we start Cogentin for the EPS? Her doctor is not even convinced that she has EPS, or at least that all the symptoms we are observing are EPS. But as a nurse friend of mine says, "You can have ticks and fleas." As usual, there are most likely several things happening at once with Miss Lis. It's never black and white. Do we decrease the Risperdol? Will this help with the insomnia? What if she has full blown rage like we used to see BR? (Before Risperdol: I'll write more about that rough chapter, soon...)

Always a gamble...

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.

Interesting...

Where We've Been

Lisbeth and Big Brother Andy

The past several weeks have been very difficult. We decided to take Lisbeth off of the Vimpat - her seizures had not improved, and she was experiencing involuntary eye movement, head drop, increased hand tremor, and drooling. And she wasn't able to make her beautiful snowflakes. We weaned Lis off the Vimpat, and started her on a drug called Keppra. It's one we had tried several years ago, and it did reduce her seizures dramatically, but it caused neurogenic pain. Since Lisbeth was recently prescribed Cymbalta, an anti-depressant that also manages neurogenic pain, we thought we'd give the Keppra another try. Once off the Vimpat and on the new dose of Keppra, Lisbeth stopped seizing, but she began to hallucinate. She was seeing fire and angels, and she obsessed about sex, murder, and death. She also started to have insomnia and rage attacks. Over the July 4th weekend, the on-call doctor thought that the Cymbalta/Keppra combo might be the culprit, so we stopped the Cymbalta. But the hallucinating and raging continued. We decided to decrease the Keppra, and so far, fingers crossed, on this lower dose, Lisbeth seems like her old self again. Lisbeth currently takes 4 anti-epileptic meds: Depakote, Tegretol, Zonegran, and Keppra, plus PRN Lorazepam for seizures. Trial and error, and guesswork. It's a frustrating journey. I'm just glad today that Lisbeth is feeling better, and pray that this new med change will continue to work for her. She deserves a break...

All Things Hurting

When we visited with Lisbeth yesterday, she told us that her brain is hurting, and her eyeballs are hurting, and her hands are hurting. All things hurting, Mom and Dad.

Even the boob is hurting.
(Lisbeth standing in front of my 2002 portrait of her and Milkweed...)

Little Milkweed ~ always a sympathetic listener...

Lisbeth showed me her latest cuts. She told me that she can't do the little cuts right now because the hands do hurt. You do know it, Mom...

I love all your cuts, I tell Lisbeth. This one really looks like lungs, and a real heart, inside the body...

...and this one looks like great big listening ears!

Lisbeth's seizure cycle impacts her artwork. Some days she is capable of tiny detail ~ other days it hurts to work. Lisbeth struggles with neurogenic pain, which can be triggered by some medications. We tried a drug called Keppra in 2003 which reduced her seizures dramatically, but then discovered that it was causing chronic neurogenic pain, so we had to take her off of it. This was unfortunate, because it was the first time since the onset of the seizures in 1988 that we saw a big decrease in her seizure activity. Lisbeth was having 12 - 20 generalized seizures a month, and the Keppra brought it down to 4-6 a month. Other meds we've tried since have caused weight gain and bloating. Lyrica was a big culprit in this regard. We started Lis on a promising new med called Vimpat a few months ago, and have had our fingers crossed that it will not have intolerable side effects. It's not supposed to cause neurogenic pain, but Lisbeth is complaining again. Garry wondered aloud to me after we left Lis's house yesterday if perhaps she has Fibromyalgia. Hard to know, as Lis would say. We see her Portland neurologist , Heidi Henninger, on February 1st, and will check in about all of this. It's always something...

...right, Milkweed?