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...


  1. You deserve a break, too, a break from all the worry and heartache you must experience because you you can't just rub it and make it better!! She's a brave and beautiful girl, these pictures are just lovely! Take a breath, drop your shoulders, and let out a great big sigh! ~karen

  2. So happy to see you back - and what beautiful photographs of Lisbeth. I hope you all get a break.

  3. My children were asking me recently it Magic really does exist anymore. With my first visit to this site I'm certain that it does. It MUST.

    Martha, I can see Lisbeth is very clear about herself and her world. She is so beautiful - inside and out.

  4. Thankyou, sweet ladies. It means alot to hear from you here. We are still fine tuning those is stressful and exasperating. But yes, Lisbeth is a strong strong spirit. xox