Well, we tried Risperdal for about 9 days as I last posted (under Behavioral section about "pretend husband"), but it didn't work well with mom. She still hallucinated and talked every night for several hours and tried to get out of the bed to "go home". The dr increased the med during the 9 days, but then decided to switch and try Seroquel (25 mg), which she's been on for 2 nights now. Didn't seem to make much difference the first night as she still carried on, but last night, she slept and I didn't hear a "peep" out of her. Maybe this one will work. Mom declined more physically under the Risperdal (or maybe it's the Gabapentin as he had to increase it too for the burning sensation she experiences in her legs). She's totally incontinent now, both ways, has to be fed almost all the time, and she leans sideways and forward more severely now. Of course, this could also be just due to the LBD too.

I hope the Seroquel works better. As you said, all those symptoms could be LBD. Seroquel is less likely to cause symptoms of parkinsonism than Risperdal (which is why it's the preferred choice among neurologists).

Kitkat-
Don't give up on the gabapentin just yet. I have not heard [much] about it causing bad things to happen. My experience with these meds for Mr B. was finally settling on a routine for sleep of Seroquel, Melatonin [OTC], and gabapentin... those in addition to his regular Exelon Patch and Namenda.

dorthea

Thanks Robin & Dorthea. I definitely won't give up on the Gabapentin as it's stopped the burning sensations in her legs. My dr sure is impressed with Dr. Boeve--he said the information he's received from reading his articles has been his best resource to both understand and treat LBD.

I agree that Dr. Boeve's treatment regimen is terrific.

Strange, though, that your mom's MD would start out with Risperdal.

I highly recommend printing out and giving a copy of Dr. Boeve's Continuum to your LO's primary care provider. Our's grabbed the copy that I gave her like a starving person given food and read most of it right there in front of us. It led to her attending special conferences on LBD.

On the medications, Kitkat, if your LO can tolerate Seroquel that is just great. I really hope it works. Twenty-five mg isn't much (for most people) but it was all my Mom could tolerate. Unfortunately we tried to go up to 50 mg and the results were so scary that we took her off all together. She became violent. My advice is to go really slowly (multiple weeks at a dosage) if you decide to up the dosage. You are obviously going through a lot and my heart goes out to you and your family.

Robin, I found an article on this association's site that said people with advanced LBD probably shouldn't use Risperdal (even though I saw it listed in Boeve's Continuum) because it could make the motor coordination worse. Just wish I'd found it before I had given it to her. I think her dr just wasn't aware of it, but when I showed the article to the hospice nurse, she called the dr who agreed that we should discontinue it and start on her on Seroquel. My daughter (a P.A.) is here tonight and the last time she had seen mom was at Easter, and she was very surprised at her decline. Mom can't seem to hold her head or her upper body upright when she's in her wheelchair now and she keeps her eyes shut most of the time, even when she's eating a meal. Annie, thanks for your kind words and advice about the Seroquel dosage--the dr said he does plan to go very slowly. Sorry it didn't work for your LO. My only sibling, my brother, is here from KY and mom is so pleased to have both her children with her for Mother's Day. Needless to say, he's shocked at her decline as he hasn't seen her since last July.

It's nice that your family is together with your mother on this day.