We are at a point where almost any task is difficult and results in yelling, hand biting ect. Her Doctor says to give it but I'm afraid of messing up her sleep/ wake cycle. We are waiting on her lab results to see if there is an infection, I may have to consider placement if this behavior continues. I feel like a total failure...going to start by bringing in some help a couple days a week. she is sleeping at night thank goodness but meds have to be crushed now or she spits them at me, giving her a bath is crazy, talking in the third person almost all the time. I feel like we are close to the end of a 10 year journey,
There is NO drug approved for use with LBD patients right now. That may change within the next year or so, but until it does (and even after it does) there is going to be a lot of trial and error with existing drugs. I think nearly every person in my LBD caregivers support group over the years tried Seroquel with their loved one. When it was good it was very, very good, and when it was bad they dropped it. Haldol can to permanent damage if it isn't tolerated well. That puts it in an entirely different category than Seroquel.
I caution against claiming that some drug that is widely used for a population is a NO NO for that population, without supporting evidence.
The LBD Association provides wallet cards (which both I and my husband carried at all times) warning against certain drugs, including Haldol. That is pretty strong evidence their has been scientific examination of this drug and it has been found dangerous. I know of no such warnings or bad findings for Seroquel.
Clearly it is well documented that Seroquel does not work well for all the people who try it. That is no reason to discourage someone whose doctor feels they are a good candidate for trying it.
(paranoia, agitation, delusions) and trial and error has to be accepted for meds. It might help quite a bit used during the daytime. You will be the one who knows whether it helps or not, or has unacceptable side effects. Even if she is placed in a facility, the best situation is stabilized med regimen, so go forward and try!
My husband was treated by an internationally known sleep pyschiatrist (for the RBD aspect) and LBD researcher/behavioral nuerologist. The two of them agreed on Seroquel as one of the first meds he was prescribed. It was highly successful for him.
Seroquel is on the list of drugs to try for various LBD symptoms, by Dr. Badley Boeve.
On the other hand, Haldol should never, ever, at any time be given to someone with LBD.
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