Butterfly

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.

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...

Challenges

Adding Lexapro to Lisbeth's meds has not softened the side effects of the Keppra as we'd hoped, so we decided to further reduce the Keppra. There is a liquid form of the medication that can be doled out in lower doses, and last Wednesday Lisbeth's staff at her home started her on a newly prescribed 250 mg a day. We thought we'd see an improvement in Lisbeth's behavior with this latest reduction, but instead, she got worse - she was sleeping for hours at a time during the day, and when she was awake, she was still having the perseverative dark thoughts and anxiety. Lisbeth slept over our house on Christmas Eve. That's when we noticed that a grave mistake had been made - the Keppra label read that Lisbeth was to receive 2500 mg a day, rather than 250!! We were sickened to realize that Lisbeth had been getting this monster dose for the previous 4 days!!! ARGH. Evidently someone at her neurologist's office put the decimal point in the wrong place. We did not give Lisbeth the Keppra that night, and got things straightened around with the on-call doctor yesterday. Lisbeth was doing well yesterday morning (thank goodness these drugs do not have a long half life) and resumed the low dose today. We'll see if it works. There's always something. Moral of the story, double check, triple check, all medication labels. Mistakes get made.

Plus and Take Away

Lisbeth and our cat Jasper (who takes over as guardian angel cat when Lis visits us...)

Plus and take away, a favorite old Lis-ism, perfectly describes what's been going on with Lisbeth's meds of late. Lis has been experiencing tough symptoms since starting on Keppra this summer. Keppra does a fantastic job inhibiting big seizure activity, but the neurological symptoms that slip through the dam are rage, insomnia, loss of appetite, dark perseverative thoughts such as, I am getting dead, body all broken, need to go to church for the dead party (funeral) and light the candles), hallucinations, and pain. We reduced the Keppra to the lowest dose, thinking that this would alleviate some of these symptoms, but no, even on 500 mg a day, this is what we're seeing. Last week we started Lisbeth on Lexapro - she has been off the Cymbalta since July, and hasn't had an anti-depressant on board since then. We are hoping that the Lexapro can buffer some of these disturbances, because if we have to take Lisbeth off Keppra, we have no other anti-epileptic to try. We've reached the end of the med road, we've tried them all, and they all have crap side affects. Choose your poison. Keppra at least does the job of inhibiting seizures - she's only having 3 or 4 grand mals a month now. No other med has worked this well. But the trade off may just be too much. This is SO HARD for Lisbeth, and extremely frustrating for us. Bah, humbug.

Meanwhile, we have lots of wonderful holiday items in the Etsy shop. Lisbeth's big sister Kaitlyn and brother-in-law Cory graciously modeled some of the new mandala tees for us last week, and the weather cooperated with a sweet dusting of snow.

So come on over and browse around - there's still time to pick up some last minute gifts from Brainstorm Studio! Let us know in the comments on checking out that you came by way of this blog, and we'll include a beautiful mandala art card with your purchase! Happy Holidays!

Stability

Lisbeth is feeling quite a bit better with this last decrease in Keppra. Less rage episodes, happier disposition. And amazing seizure control. It's always a challenge to find stability.

Check it out - one of Lis's mandala tees is featured in this blog!

Rage

Lisbeth is having rage episodes again. We are going to reduce her Keppra once more with the hope that we can find a healthy balance. The Keppra is doing an amazing job as far as her seizure control, but we are still seeing frequent episodes like the one filmed here. Be advised upon viewing that this video contains loud profanity. Lisbeth and her helper, Caitlin Geary, came over this afternoon to take a swim in our pool, but Lisbeth didn't swim. Her behavior started to escalate (it can turn on a dime). Lisbeth has no control over her behavior during a rage attack, just like she has no control over a seizure. Typically she swears and hits and/or throws things. We have to administer her PRN lorazepam in these instances. When Lis was younger and had rages, her worst words were, YOU'RE FAT! YOU'RE FAT AS A CAT!! Then when she got older, around high school age, she had a rage one day and stunned us all with some brand new vocabulary words - she'd learned how to swear! To this day, these are the only two swear words that she knows, and she directs them towards men and women alike. Her high school special ed teacher used to joke with us that she was going to teach Lisbeth some gender specific swear words. No thanks. This is quite enough...

About 20 minutes after the lorazepam...

Thank God for medication.

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...