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.

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!

MidSummer Magic and Miracles

You got surprised of it. ~ Lisbeth

The past several weeks have been such a difficult trial for Lisbeth (and us) but we have hit a plateau - a holding pattern - and right now Lis is in a wonderful space. We've kept the Keppra at 1500 mg a day - she has not had a grand mal seizure in over a month, the rages and hallucinations have wound down, she has lost the weight that the former meds had caused, and...(dare I say it?)

Yes.

She is h a p p y.

Lisbeth's expressive arts therapist, Stephanie Cimmet, is currently doing alot of dance and movement with Lis, and Lis says this makes the whole body feel better.

Yes.

Yes, indeed.

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...

Bacon Portrait

No, not Frances Bacon...

Just as Lisbeth sees all sorts of figures and animals in her cut paper designs, she finds these things in other places, too. You've read about Jesus in the tortilla. Well, this past weekend we had a sleepover with Lisbeth and our grandchildren, and while we were eating breakfast, Lisbeth discovered a portrait of her brother Andy in her bacon! This was cause for much delight. She's a funny girl...

The Kid Hospital, Part II

Once Lisbeth recovered from the first surgery, she had daily visitors. High Tea with Sister Kaitlyn...

High Tea with Jessica Lindgren, who was in the hospital for long term monitoring...

Lunch with Gramma and Grampa Simmon (Lis-ism for Simmons)...

Cousin Elizabeth stopped in on her way to a dance recital...

Sister Kaitlyn and Brother Eben...

Making funny faces...

Brother Alec and Brother Andy. Lisbeth's illness has been a strengthening experience for my other children, but also a very, very difficult way to grow up. There need to more resources for families with children with special needs regarding the challenges for the siblings...

Place of refuge in the middle of the city...

...where tears were shed and many prayers voiced aloud to these magnificent old beech trees...

Visits from other kids in The Kid Hospital...

...who enjoyed making art with Lisbeth...

Paper plate ladies and rubber glove critters...

More airplane glue...

New headdress...

A sweet poem from Gramma Simmon...

At this point the doctors were gradually taking Lisbeth off her meds to stimulate seizure activity. With the implanted electrodes, they would now be able to get an EEG with far more detailed information than a topical EEG can yield.

More pics tomorrow...

The Kid Hospital, Part I

Mother/Daughter haircuts.

First surgery over. Electrodes implanted.

I sketched Lis while she slept.

So hard.

So brave.

They let us paint Lisbeth's window with her favorite characters...

It was at just this time of year 18 years ago that we were readying for a long stay at Boston Children's Hospital, aka the kid hospital (Lis-ism). Lisbeth was scheduled for the final phase of testing to see if she would be a candidate for brain surgery. The first phases of testing had happened over the previous 2 years, including an earlier stay at the hospital for long term (non-invasive) monitoring. The neurology team discovered that Lis had a seizure focus in her left temporal lobe and we had high hopes that this lesion could be removed, and that Lis would finally be seizure free. This last phase of testing is called Invasive Monitoring - an EEG where the electrodes are surgically implanted on the surface or within the depths of the brain. I knew that Lisbeth would have to have her head shaved, so we had her hair cut short in preparation. I got mine cut short, too, in support of Lis. These pictures are from the beginning of our stay - we were there for 3 weeks. Lisbeth was confined to her bed the entire time because she was hooked up to monitors and being videotaped. Fortunately we have kind and generous relatives in Boston who let my husband Garry and I stay at their house during this time. We did the stay in shifts so that Lis was never alone. One night one of us would be on, sleeping on a cot in her room, while the other would be off, sleeping at our relatives' place. What a life saver this was, to be able to walk out of that hospital into the fresh air and sunshine of early May, and to walk the mile back to my cousin's house, where normal family life was happening. It helped us to put our skin back on every 24 hours. Children's Hospital is an intense place.

More pics tomorrow...