Lisbeth's Story on Calvin's Story

Brunswick, Maine writer Christy Shake and her son, Calvin.

I have the great honor of being featured today on Christy Shake's noble blog, Calvin's Story. Christy writes:

My son Calvin was born six weeks early with significant neurological problems of unknown origin. When he turned two he was diagnosed with epilepsy, which eclipsed all other adversity we had yet encountered. No drug or dietary treatment has completely controlled his seizures and they continue to pummel our little boy. The seizures and drugs have stifled his development and there seems to be no end in sight to this nightmare. The only hope is a cure. On behalf of Calvin and the three million Americans who suffer from epilepsy please help bring us one step closer to that dream.

Auntie Lis

Lisbeth enjoyed lunch out with her niece Cecilia and nephew Calvin yesterday ("Brother Eben's little kids" in Lis speak... :^) And Ceci and Calvin enjoyed spending time with Lisbeth and Milkweed at Lis's place after lunch. Lisbeth is feeling better since the Risperdol reduction. She's been sleeping good - no more Benadryl - and her mood has been great! It's been two weeks since the first reduction - we go down another notch tomorrow. Fingers crossed, we may be onto something that's actually improving things!

Lisbeth & Milkweed

Letting Go

Kathe Kollwitz

Lisbeth is emotionally so very young and she is an adult. She has her own support system, her own higher power, her own life. I have to be careful to take care of myself, to have a large part of my life be separate from Lisbeth's, the same as it is with my four other adult children. I must constantly determine where and when I am needed and step back and let go when I'm not. Easy? Noooooo..............

Now We Wait

Lisbeth in a staring seizure...

Dad waiting for the window of opportunity to administer 1 mg Ativan...

Kneeling at the Altar of Patience...

We finally did get it into her, so now she will rest and hopefully clear up...

Lisbeth's Milkweed Shrine table...

Garry and I saw Lisbeth's psychiatrist last night, then brought the orders over to Lisbeth's staff at her house. While there, we helped to give Lisbeth an Ativan for staring seizures. We are stopping the Benadryl, and starting a slow decrease of the Risperdol. We will wait and see what happens. If her rage attacks recur, we spoke about the possibility of trying another anti-psychotic once Lisbeth is off Risperdol, one that does not cause EPS: Seroquel.

Sigh.

To quote Lis, Hard to know...

Off Track, and Betting...

Lisbeth, telling her Dad about "the eyeballs hurting" on Christmas morning. Benadryl can cause dry eyes, and Lisbeth's staff has been administering eyedrops several times a day since the Benadryl increase.

Well, Lisbeth went home after her workout at the Y yesterday and had a seizure, and her aide phoned this afternoon to say she's just had another, making a total of 5 this week. Not good. We think the Benadryl is the culprit, so I paged her psychiatrist who has faxed a stop order to Lisbeth's staff. My husband and I will meet with him this evening to talk about next steps. Do we start Cogentin for the EPS? Her doctor is not even convinced that she has EPS, or at least that all the symptoms we are observing are EPS. But as a nurse friend of mine says, "You can have ticks and fleas." As usual, there are most likely several things happening at once with Miss Lis. It's never black and white. Do we decrease the Risperdol? Will this help with the insomnia? What if she has full blown rage like we used to see BR? (Before Risperdol: I'll write more about that rough chapter, soon...)

Always a gamble...

Back on Track

My husband and I attempted to get Lisbeth to swim with us in the therapy pool at the YMCA today. It was a no go. Lis used to love to swim and participated in the Special Olympics, winning several medals when she was in high school. In recent years, though, the pool has become a source of anxiety. We keep hoping that we can gently ease her back into a swim routine, but there is no forcing this, of course. Just showing up at the Y and being willing to consider a swim is a positive thing. Lisbeth did agree to walk the track today, and completed five laps! And she noticed aloud that this made her legs feel good: "all healed up" was her description.
Way to go Lisbeth!