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!

A Prolonged Seizure

Lisbeth during a recent ER visit. For someone with uncontrolled seizures, this is not an uncommon occurrence.

Lisbeth had a tonic clonic seizure at 10:30 yesterday morning that lasted almost 15 minutes. This is rare, and it is an emergency situation. Staff called the ambulance - by the time they arrived at Lisbeth's house, the seizure had stopped and she was doing some of her usual postictal behaviors. She had been given 1 mg of lorazepam at 10:00 for seizure aura, but it had not yet taken full effect. I advised by phone not to transport Lisbeth to the hospital since she'd had the lorazepam, was responsive, and her vital signs were stable. Lisbeth slept quite a bit after the seizure and was very cloudy. (One neurologist told us years ago that a tonic clonic seizure uses up the same amount of energy as playing a full football game. I believe it). Staff kept a close watch on Lisbeth for more signs of seizure aura, in which case they would have immediately administered another lorazepam. Lis is still very sleepy this morning, but is a bit clearer - remembering and talking about coming over tonight to have dinner with us. Lisbeth's big sister Kaitlyn and her husband Cory are bringing down fresh lobster from Islesford where they live. It's Lisbeth's favorite.
We think that this unusual seizure was due to the med changes that are in place, the Vimpat increase and the introduction of Cymbalta. Fingers crossed it was an isolated event, and Lisbeth will be able to enjoy her weekend. I am posting this video of a little girl named Jessica Lindgren having a tonic clonic seizure. Jessica lives here in Maine, is the same age as Lisbeth, and also has uncontrolled seizures. Her mother, Leslie Lindgren, participated in the making of this video about epilepsy back when Jess was just six. I think that it is important to see what a seizure looks like. There are millions of people in the world with epilepsy, and you may be called upon one day to help someone having a seizure. DO: Time the seizure. Keep the person who is seizing safe - cradle her head, or put a pillow beneath it, and turn her head slightly to the side. Loosen clothing, move objects that might bruise her jerking arms and legs. Speak softly and reassure her that it is almost over and that you are there. If the seizure lasts more than 5 minutes, CALL 911. Stay with her after the seizure ends - she may lose bladder or bowel control, or vomit. She will be very cloudy and will need assistance. DON'T put your fingers or anything else in her mouth!!! And don't panic - seizures are rarely life threatening.

Valen's Day

New Giant Heart mandala!

A Valen dinner party, with Red Velvet Cake...

...and a Valen Smoothie for breakfast, with a new little bear from Daddy.

And a brand new bear from Mom. So soft, and the colors of Milkweed.

(Someone else loves Lisbeth's new bear...)

Lisbeth celebrated Valen's Day (Lis-ism) by having dinner with us and sleeping over last night. Lis loves Valen's - she routinely cuts hearts into her snowflake/mandalas. This past week has been a good one for Lis. Her staff reported that she has been mostly content and that there have been no big seizures. We are currently increasing her Vimpat, slowly, and this is keeping the big seizures at bay, but Lisbeth is still experiencing the eyes getting stuck, a milder seizure activity that we hope will subside as we step up the Vimpat. She also started taking Cymbalta this week, and we think that this is a good part of the reason for her improved disposition. I can always tell when Lis is feeling more like her old self because her snowflake production increases! She brought over a whole pile of the new cuts, including the giant heart snowflake pictured at the top of this post. Yay.