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.

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...

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.