Re: Need help for dad

[Guest guest]

Ellen,

I did not have the problem with Mom that you talk about, but I was

always very careful not to use the amount of meds the MDs gave me. Mom

could not tolorate them. I sometimes could cut the dosage and give it

to Mom over the day or night, but full strenth usually gave me lots of

problems.

I would then either take her off or try smaller amounts (cut the pills)

over the day. Sometimes that worked.

Good luck and welcome.

Donna R

Do you want to read more about Lewy Body? You can also read the

Thistle, the LBD Newsletter. Just click on:

http://www.lewybodydementia.org

[Guest guest]

Ellen,

Rapid eye movement (REM) sleep behavior disorder (RBD) is defined as

parasomnia in which violent dreams and dream enactment behavior

occurs with a tendency to act out dreams.

In an October 2004 article by Dr. Bradley Boeve he writes about sleep

disorders in LBD saying it is a commonly found in LBD patients. You

can read this article on the LBD Association web-site at

www.lewybodydementia.org by clicking on Links to Other Sites. In the

article Dr. Boeve goes on to say " Affected patients seem to act out

their dreams by yelling, screaming, punching, kicking, swinging,

jumping out of bed, etc. The dreams often have a chasing or attacking

theme, with the patient attempting to protect himself or herself.

When the patient is awakened, the description of the dream tends to

match the behaviors that were exhibited. Injuries to patients and

their bed partners can occur. RBD often begins years or even decades

before any cognitive or motor symptoms develop, and therefore RBD may

be the first sign of an evolving neurodegenerative disorder in some

individuals. "

In Table 4-8 of the article Dr. Boeve makes medication

recommendations for symptoms, behaviors and disorders which you might

want to read, print, and discuss with the physician.

Although you suggested that your Dad come to your house for a night

or two, this could trigger worse episodes (as it did with my father)

by changing his regular place of sleep. My father has only been on

Exelon so I cannot give you any advice on Seroquel.

Sorry I couldn't be more help.

Jan in rainy Sacramento

>

> My dad is 74 years old and was dx'd with LBD a few months ago. He

> has had hallucinations and short term memory problems for a number

> of years but is fine physically. The biggest issues my mom is

> trying to deal with is the terrible night terrors. Doc told us

> these were hallucinations not nightmares and prescribed Seroquel.

> He told us to start him on 50 mg before bed and 25 mg during the

day

> as needed. We were told to increase to 100 mg at bed after 3

> weeks. When dad first started the 50 mg at bed, he slept most of

> the day for about 3-4 days, then started coming around. Last month

> when we increased his med to 100 mg. he did much worse, so we

> reduced it back to 50 mg. He is having some trouble again at

> night. Mom told me that last night he was screaming and extremely

> agitated in his sleep at about 1 p.m. She told me he took Seroquel

> at 9 p.m. After a long discussion tonight Mom and I decided to try

> giving him 25 mg 3 times per day and 50 mg at bed. I would really

> appreciate any info anyone can share. My mom is having a very

> difficult time coping. I am trying to help as much as I can, but

> with 2 kids, one of whom is disabled, my hands are full most of the

> time. Dad wants to be with mom at all times. I tried to convince

> him to come to my house for a visit tonight but he tells me he

won't

> leave Mom along because she is having such a hard time. Dad

> remembers his hallucinations and is trying to make sense of it

all.

> We tell him they are not real and he is totally shocked. We have

> tried going along with it and that made things even worse. I am

> hoping more regular doses of Seroquel through the day may help.

>

> I would really appreciate some help, we were given the prescription

> and were basically left to figure the dosage out. It takes 2-3

days

> to get a call back from doc. and I feel people living with LO with

> LBD are the most knowledgable and helpful.

>

> Thanks

>

> Ellen