November 19, 2011
Gabriela had been put into Huntington Hospital on a 72 hour hold, then the hold was extended for an additional 14 days, bringing the total to 17 days. What was really worrying me was that at any point, either the doctor or the insurance company could feel that Gabriela no longer “met criteria” and then could discharge her.
There is a huge difference between the definition of “acute” and being all better. Gabriela was definitely getting better but she wasn’t ready to leave, and thank God her doctor saw it the same way. Gabriela was still hearing voices, and Dr. Duncan knew that that required increasing the dose of Seroquel until the voices had been conquered.
Gabriela had initially been started on 25 mg of Seroquel, just to make sure there were no side-effects. Then she was moved to 100mg, then 150mg, then 200mg. Each dose increase included an optional 25 mg at night if Gabriela needed help to sleep, because the voices and “disorganized” thoughts were more concerning to Gabriela in the evenings.
I went to visit Gabriela after the first few increases of Seroquel. When I got there Gabriela came out of her room to greet me, and as she began to speak her head twisted with an abrupt jerk to the side, and she let out a groaning sound.
Her appearance was tousled, and each time she tried to speak her head would be thrown and her words couldn’t make their way out. This was a condition called myoclonus. Gabriela had suffered from a mild form for the last couple of years, which had caused her slight facial twitches; but now the myoclonus was BIG … so big, she couldn’t even hold a conversation.
As we stood in the hallway I’d started to ask Gabriela how long this had been happening, when Abby, the social worker, arrived and interrupted us, asking that we join her in the conference room.
In the conference room, Gabriela sat next to Abby and across the table from me. Gabriela explained to Abby, with constant interruptions from her myoclonus, the issue she was having. I tried to finish the question I had been asking Gabriela when Abby had interrupted us in the hallway; but Abby shushed me rudely, and began to talk to Gabriela about stress and relaxation being key to stopping the myoclonus.
I waited as long as I could. My ears started to burn. I could feel the blood pounding as my pressure rose.
I interrupted Abby without even glancing at her. “Gabriela, what dose of Seroquel are you on, and when did they change it?” I could feel Abby’s anger from across the table.
Gabriela stammered, “200mg, just today”.
Abby was furious! “Do you see what just happened there? Do you see what you just did”? She scolded me like I was a child.
“Yes,” I responded matter-of-factly, “I asked my daughter a question and I got the answer.” I was just as angry.
Abby stopped and looked at me sharply, mustering her most threatening and intimidating glare. I thought to myself, “Is that the best you can do?” Her behavior was laughable.
She ended the meeting. I immediately took Gabriela to the nurses’ station and told them the dose of the Seroquel was too high, and that it needed to be lowered immediately.
Gabriela and I sat in the day room waiting for the psychiatrist for that day to arrive. She was aggravated and I couldn’t blame her. It’s hard enough to have epilepsy and psychosis, but add to that over-the-top myoclonus. Gabriela’s frustration was inconsolable.
The nurse on duty wanted to give Gabriela another medication to stop the myoclonus. She explained to her that if she took this new medication and it stopped the myoclonus, then they would know the cause was the Seroquel. Gabriela respectfully declined the offer of the medication to stop the side-effect of the Seroquel which had been prescribed to stop the side-effect of the Zonisamide which I believed had caused the psychosis in the first place!
I learned there really is no limit to the amount of medicating that goes on if you aren’t paying attention and just believe that the doctors know best.
The on-call doctor arrived just after noon. Gabriela and I spoke with him, and he asked softly what I felt the appropriate dose of Seroquel should be? I explained that at 150mg of Seroquel Gabriela had had no side-effects, and that I thought they could continue with the 25mg in the evening “as needed” if Gabriela felt she needed it to sleep.
The doctor agreed it was a good call.
Some days were like that, a single event could take up the entire day.
By the time we had our evening phone call, Gabriela wasn’t having any myoclonus at all. But she was very tired, since her entire day had been spent with her muscles doing whatever they wanted, and she’d had no choice but to go along for the ride.