Saturday, July 24, 2010

Feel Better Color

Lisbeth with her new green feel better ring.

During the last several difficult weeks, Lisbeth has been instinctively surrounding herself with the feel better things (Lis-ism). The feel better blankets, feel better bears, feel better books and feel better pillows. She has also started to gather all things green around her. (Like all artists, Lis delights in color and pattern, and enjoys collecting similar items, calling them the same the same...)
Lis with her helper, Sara Montegut, after a swim yesterday. Lisbeth has been swimming twice this week! This is a huge step! She used to love to swim, and even won gold medals in the Special Olympics in High School. But for the past couple of years, anxiety has prevented her from getting into the pool. We tried all winter to help her with this at the local YMCA to no avail. But Wednesday and Friday this week, she swam with us in our backyard pool, and laughed and enjoyed herself. I cannot tell you how miraculous this seems and how glad this makes us feel...
Proud and glad Dad...

Proud and glad friend (and Lisbeth's former special ed teacher), Jo Goiran...
Going green from finger to toe...
It's the feel better ring, Mom and Dad. Guys couldn't believe it!
True!

Friday, July 23, 2010

MidSummer Magic and Miracles



You got surprised of it. ~ Lisbeth
The past several weeks have been such a difficult trial for Lisbeth (and us) but we have hit a plateau - a holding pattern - and right now Lis is in a wonderful space. We've kept the Keppra at 1500 mg a day - she has not had a grand mal seizure in over a month, the rages and hallucinations have wound down, she has lost the weight that the former meds had caused, and...(dare I say it?)
Yes.
She is h a p p y.
Lisbeth's expressive arts therapist, Stephanie Cimmet, is currently doing alot of dance and movement with Lis, and Lis says this makes the whole body feel better.
Yes.
Yes, indeed.

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Thursday, July 15, 2010

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...
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