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Kathy H

You may want to try a Mayo Clinic search. It should have lots on LBD>

But you don't have a cooperative MD which makes it harder. You don't need to

have a published article. You or the person in charge can tell them you want it

stopped and it should be stopped. Partly sounds like you think it is working.

You are in control, if you don't want the drugs, you/the DPOA are speaking for

your father. And they have to listen.

If you go to LBDA site, the MDs on the Advisory Board are all into this disease.

www.lbda.org

In the book section, there is a book that was written for MDs by MDs, some who

are on the LBDA Board.... Dementia with Lewy Bodies and Parkinson's Disease

Dementia. It was published by and Francis. There are several authors.

It was published in '06 and is the latest thing out. It is written for MDs.

Tell them to show you an article in the Journals, that Ativan is ok to use.

They are the MDs and they should know just why they are giving him the meds. Or

have them show you their PDR. It is a nice big book with all the drugs

referenced,. You can get a simplified version of the PDR at the Drug store with

all the meds in it.

I think I paid $3.00 for mine. Might be more now. Maybe $6.00 now.

I think there is a site that others use to look up all the drugs. Maybe someone

will come up with it. I know I read recently that while it is used, it is not a

very good drug to use with the Elderly.

Use the latest PDR version. " 08 is the latest and I'll bet '09 is about to come

out. Even though it is 10 years after I went to get my Mom, there still isn't

much that they know about LBD. Now at least there is a dx which we didn't have.

Now if they could just learn how to treat it.

Keep your chin up and don't get to run down or you won't be good for anyone or

even your self.

Hugs,

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

Drug reaction to Respirdone, would

appreciate any information or suggestions

> To: LBDcaregivers

> Date: Tuesday, September 16, 2008, 8:06 AM

>

>

>

>

>

>

> My father has had LBD for some time, but he was walking, going to

> restaurants and socializing, able to hold interesting conversations

> on good days, and aware that he was having hallucinations. My

mother

> needed a break, so she scheduled him for 8 days in respite care

while

> she went on a trip. He seemed okay with the change, but on the 2nd

> day, he became agitated. He was given Respiridone (had never had it

> before) and 4 hours later became violent (threw a vase and chair at

a

> nurse, and took someone's walker away). He was never violent before

> this. The police were called, and he was very happy to see them as

> he thought workers at the home were planning to kill him/my

> mother/and me. When the police arrived he was glad to see them

> because he knew they would protect him. At the hospital he was

still

> agitated, but very happy to see me as he was relieved that I was

all

> right. They gave him another dose of Respiridone 12 hours after the

> first dose. 12 hours after the 2nd dose, he was trying to speak but

> could barely move his mouth, was flailing his limbs and having

muscle

> spasms, was very stiff, and extremely agitated. There are no

physical

> signs of a stroke, though they didn't do a scan as they would have

to

> anesthetize him for that.

>

> I told the nurse that he was having a reaction to Respiridone, and

he

> was not given any more of it. He also received Seraquil but that

was

> stopped too. He is still receiving Ativan. Since the Respiridone

was

> stopped he has been improving and can communicate. He asked me

> me " how could this be, what happened? " and he asked if he had

killed

> anyone. Then he talked about how he had hit a dog with his car

once,

> and asked if the dog lived, and how old the dog is now. He also

asked

> how long he has been out of control.

>

> As days go by he is improving, but he does not recognize family

> members but has an emotional reaction to us. My mother returned

> early. I told him I'm his daughter. When he asked if I will still

be

> his daughter and I said of course I will, he sobbed. He thinks he

is

> 20 or 30 years old and is puzzled that he has 4 grown up children

and

> has been married for over 50 years. Eventually he started talking

> about random things in a very entertaining way, singing, telling

> stories. Yesterday he was in restraints in a chair but dragged

> himself and the chair nearly out of the room and yelled to be let

out.

>

> I'm heartbroken and afraid for him. I'm wondering if the Ativan

could

> be a problem too. I would appreciate very much if people have any

> suggestions or thoughts about what happened and what can be done to

> help my father.

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

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Kathy - unfortunately there's no articles that discusses Ativan &

LBD. (I guess it's another thing re: this disease that only the

caregivers see and it's not registering to the doctors..)

The closest info we have are 2 things:

Read this message:

http://health.groups.yahoo.com/group/LBDcaregivers/message/80040

And the other - in the latest symposium in FL (you can get a copy of

the DVD from LBDA by emailing LBDA@...) in a Q & A segment w/ one

of the doctors - one doctor did explain that Ativan should only be

given on rare occassions and at a minimum. I got from that Q & A

session that when it's started to be given on a regular basis (like

NH & Hospitals will do b/c the pill is easy to give b/c its fast

acting) that's when it leads to trouble.

> >

> > From: Kathy Hanson <silkkath@>

> > Subject: Drug reaction to Respirdone, would

> appreciate any information or suggestions

> > To: LBDcaregivers

> > Date: Tuesday, September 16, 2008, 8:06 AM

> >

> >

> >

> >

> >

> >

> > My father has had LBD for some time, but he was walking, going to

> > restaurants and socializing, able to hold interesting

conversations

> > on good days, and aware that he was having hallucinations. My

> mother

> > needed a break, so she scheduled him for 8 days in respite care

> while

> > she went on a trip. He seemed okay with the change, but on the

2nd

> > day, he became agitated. He was given Respiridone (had never had

it

> > before) and 4 hours later became violent (threw a vase and chair

at

> a

> > nurse, and took someone's walker away). He was never violent

before

> > this. The police were called, and he was very happy to see them

as

> > he thought workers at the home were planning to kill him/my

> > mother/and me. When the police arrived he was glad to see them

> > because he knew they would protect him. At the hospital he was

> still

> > agitated, but very happy to see me as he was relieved that I was

> all

> > right. They gave him another dose of Respiridone 12 hours after

the

> > first dose. 12 hours after the 2nd dose, he was trying to speak

but

> > could barely move his mouth, was flailing his limbs and having

> muscle

> > spasms, was very stiff, and extremely agitated. There are no

> physical

> > signs of a stroke, though they didn't do a scan as they would

have

> to

> > anesthetize him for that.

> >

> > I told the nurse that he was having a reaction to Respiridone,

and

> he

> > was not given any more of it. He also received Seraquil but that

> was

> > stopped too. He is still receiving Ativan. Since the Respiridone

> was

> > stopped he has been improving and can communicate. He asked me

> > me " how could this be, what happened? " and he asked if he had

> killed

> > anyone. Then he talked about how he had hit a dog with his car

> once,

> > and asked if the dog lived, and how old the dog is now. He also

> asked

> > how long he has been out of control.

> >

> > As days go by he is improving, but he does not recognize family

> > members but has an emotional reaction to us. My mother returned

> > early. I told him I'm his daughter. When he asked if I will still

> be

> > his daughter and I said of course I will, he sobbed. He thinks he

> is

> > 20 or 30 years old and is puzzled that he has 4 grown up children

> and

> > has been married for over 50 years. Eventually he started talking

> > about random things in a very entertaining way, singing, telling

> > stories. Yesterday he was in restraints in a chair but dragged

> > himself and the chair nearly out of the room and yelled to be let

> out.

> >

> > I'm heartbroken and afraid for him. I'm wondering if the Ativan

> could

> > be a problem too. I would appreciate very much if people have any

> > suggestions or thoughts about what happened and what can be done

to

> > help my father.

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

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