Fwd: second opinions - Question from Midge Digest Number 2907

[Guest guest]

Midge,

I think getting a second opinion is always a good idea, especially if, as

said so well, you need a NAME (definitive

diagnosis). But....don't expect the second opinion doctor to say something

as definitive as " your mother has likely taken a sudden turn for the worse

because she's been given Respiradol. " It is key that the second opinion

doctor have LBD experience otherwise there would be no point, IMHO.

Robin

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>Message: 6

> Date: Tue, 14 Mar 2006 06:26:34 -0800 (PST)

>

>Subject: QUESTION FROM MIDGE

>

>I HAVE NOW MADE AN APPT. WITH THE GERIATRIC NEU DEPT AT OUR LOCAL

>RESEARCH HOSP (UAB/KIRKLIN). AS YOU KNOW FIRST OF JANUARY MAMA WAS

>HALLUCINATING AND IT WAS SCARING HER SO I TOOK HER TO HER GENERAL PRAC DOC

>AND HE ADMITTED HER. HIM AND A PSYCHIATRIST(DON'T REALLY KNOW HOW MUCH HE

>KNOWS ABOUT LBD JUST BECAUSE HE SAYS HE KNOWS I REALLY DIDN'T BELEIVE HIM)

>HE WORKS WITH TOOK HER OFF ALL MEDS AND PUT HER ON RESPIRADOL AT NIGHT

>WHICH HAS TO BE GIVEN IN APPLESAUCE CRUSHED UP BECAUSE SHE CAN NO LONGER

>TAKE A PILL. SHE WENT FROM BEING ABLE TO WALK, COMMUNICATE CONSIDERABLY

>IN PART, GOING TO RESTROOM BY HERSELF, AND STILL PARTIALLY BATHING

>HERSELF. TO NONE OF THE ABOVE. SHE IS STUCK IN A CHAIR OR BED MOST OF THE

>DAY, CANNOT TALK AND MAKE ANY SENSE, DOESN'T KNOW WHEN SHE NEEDS TO POTTY

>AT ALL, HAS TO BE BATHED AND FEED( WILL NOT EAT HARDLY AT ALL) AND DOESN'T

>KNOW WHO ANYONE IS OR WHERE SHE IS OR WHAT SHE'S DOING ANYMORE. SHE'S GONE

>FROM US AND THIS IS VERY HARD TO ACCEPT SINCE IT I S SUCH A DRASTIC

>DECLINE (OVER NIGHT). I WANT A SECOND OPINION OR AM I GRASPING AT STRAWS?

>JUST WANTING MY MAMA BACK. I AM I TO ACCEPT HOW SHE IS OR SHOULD I RALLY

>HER UP TO THE OTHER DOC APPT.( THIS WILL BE A TASK)?

>

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>Message: 7

> Date: Tue, 14 Mar 2006 16:06:45 -0000

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>Subject: Re: QUESTION FROM MIDGE

>

>As you may recall my mother was in a very similar situation:

>* Her hallucinations and hysterics scared us to the point that we

>sent her to a hospital to be observed.

>* At the hospital she was given Risperidol (on top of other meds)

>* She was there for 3 weeks.

>* She walked in and was wheeled out - we were told temporarily -

>hasn't walked since.

>

>Before Resperidol: mom was in an assisted liv. facility, mom was in

>near hysterics, mom hallucinated inc. seeing my deceased father, mom

>was crying constantly, but mom was also walking (shuffling) with a

>cane, able to go out to church and CVS with her companions, have

>conversations (even though she'd make stuff up as she went), walk to

>the dining room for dinners at the ALF, use the bathroom on her own

>regularly, dress herself (although she was having difficulty

>periodically - to the point that we were just about to request that

>the ALF dress her in the AM), enjoyed 'baby hour' at the ALF,

>enjoyed 'movie hour' at the ALF, enjoyed 'arts & crafts hour' at the

>ALF, etc. (In hindsight at this point we should have just removed her

>from the independant ALF into a dementia ALF - but instead she went

>into a hospital to be tested, observed, and in conclusion given

>Resperidol.)

>

>After Resperidol: mom can't walk (at first they said it would be

>temporary) she's been in a wheelchair since, incontinent, dementia

>more pronounced, rapid leg movement on one side w/in the wheelchair,

>can't hold a conversation, only able to answer in yes/no (for the

>majority of times, once in awhile she'll surprise us), hallucinating

>people and animals, crying constantly, for the most part able to feed

>herself but at times unable to, now in a NH for good...

>

>So to answer your question regarding a 2nd opinion. I personally

>couldn't rest until I had a NAME (although family members felt

>differently). The NAME however, didn't change my mother's current

>situation. But who knows - if the NAME could have been treatable then

>it could have changed things. I wouldn't have done anything

>differently - I needed the NAME and now that I have a confirmed NAME -

> can try medications that could help mom's symptoms. Maybe it's too

>late - but worth a try. Anything for my mom!!

>

>; loving daughter of Maureen of Boston, MA; finally diagnosed

>with LBD on 2/06 after also being diagnosed with everything from AD

>to Vascular Dementia caused by mini strokes to Binswengers...; was

>victim to rapid progression from Risperidone (or combination of

>Risperidone with other drugs OR possibly received another " bad drug "

>when she was observed/tested in a hospital in 10/05); in a NH since

>11/05.