Monday, December 27, 2010

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.

Thursday, December 16, 2010

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!

Saturday, November 20, 2010

Happy Birthday, Lisbeth!














Lisbeth turned 29 on the 27th of October. Here are some pics from her wedding theme Halloween/Birthday party. Bittersweet...

Wednesday, September 29, 2010

A Studio of Her Own

Lisbeth and Jamie Silvestri of Artvan
Lisbeth and her helper, Sarah Montegut (in the doorway), and her house manager, Holly Spence.
Jamie explaining some of the materials that need tending...




A couple of weeks ago Lisbeth started volunteering for Artvan, a travelling arts thearpy program here in midcoast Maine, spearheaded and run by the highly creative, big hearted, energetic Jamie Silvestri. Jamie showed Lisbeth around the supply building - Lis and her helper will be coming in weekly to help keep the space clean and organized. In exchange for this, Jamie has offered a workspace for Lisbeth in the building. So now Lis is in the process of creating her own studio, a place to go and make her beautiful cut paper mandalas, masks, and other whimsical creations. So good.

Wednesday, September 1, 2010

Mixed Up Mandalas





New crazy quilt patchwork potholders in Lisbeth's Etsy shop.
C'mon over to the shop and browse around! We have a Big End of Summer SALE going on!! All sorts of unique gift ideas! Get a jump on your holiday shopping with these sweet deals!!!

Wednesday, August 18, 2010

Lisbeth's Got a Brand New Bag


Lisbeth recently received this pretty handmade bag in the mail from my on-line friend Karen of KaHolly: Portraits of Our Natural World. Karen saw that Lis has been loving all things green lately and decided to surprise her with this sweet gift. Lisbeth loves to get mail and was thrilled to find this package in her mailbox. Thankyou for being so thoughtful, Karen! Lisbeth loves her brand new bag!!

Saturday, August 14, 2010

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!

Wednesday, August 4, 2010

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...

video

About 20 minutes after the lorazepam...

video

Thank God for medication.

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!