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 Should a hospital have know better? 
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Joined: Mon Feb 16, 2009 1:00 pm
Posts: 4
Location: Allyn, WA
Post Should a hospital have know better?
My mother has been diagnosed with Lewy Body Dementia.
In 2004, after her doctor changed her from a tricyclic antidepressant (that he had her on for 15 years!!) to an SSRI, my mother admitted herself to a Geropsychiatric Hospital with agitation, vivid dreams, fear, anxiety,and thinking she was going to kill my dad. They gave her many anti-psychotic and neroleptics. She had horrible reactions to these drugs marching around 24 hours a day until she lost 40 lbs. and they had to restrain her with a lap pillow. She could not stop trying to get up and walk around. She rarely slept and fell constantly.
I had to fight to get her back out and wean her off those drugs in order to see if they were right, that she was "gone" and needed to go to a nursing home. After that, she lived with my dad for a few more years with definite signs of Lewy Body Dementia and some Parkinsons before beginning to fall and needing to go live in a nursing home.
Doctors now are suprised that she lived through it. She had to go back to that hospital in 2006 because she wanted to "escape" and was hitting my dad and they knew all about Lewy Body disease by then.
My question is, in 2004 should the doctors at that hospital known better than to have given her so many drugs when they could see that the drugs were not calming her down, not relaxing her, not making her sleep, etc.? (they tried to do an MRI on her brain and an x-ray of her foot but could not drug her enough to put her to sleep and stop moving.)Drugs were Klonopin, Seroquel, Trazodone, Lorazepam, Celexa, Effexor, Benicar, Clonidine, Tiazac, Levaquin, Valium, Abilify all tried out in a 30 day period.
thank you,
Nancy


Mon Feb 16, 2009 2:41 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Tough call. I would say your mother didn't get very good care but she probably got the standard level of care that many were given in 2004. It's important to remember that she did not have an LBD diagnosis in '04. (At least that's my understanding of what you've said.)

Even if she had received an LBD diagnosis in '04, caregivers and MDs regularly give antipsychotics to many LBDers. Though they are dangerous meds, they are fairly standard treatment for many with LBD.


Tue Feb 17, 2009 4:20 am
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Joined: Mon Feb 16, 2009 1:00 pm
Posts: 4
Location: Allyn, WA
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Thanks Robin.
I guess my frustration is that I think that one month did what maybe a few years would have done. We would have had more time with her but then I think those years probably would have been spent trying to figure out what was wrong with her. It's been a long time, but when I watch my dad go every day and sit at her side for hours, I feel like I should have done more. I didn't start looking up the drugs until she had been in there a few weeks. Of course, the minute I mentioned learning anything online they just laughed at me......I only looked at the drug company websites for side effects so it wasn't like I was reading people's blogs (although, they can be a wealth of information, too.)
It was so strange to find out there were all these places where a drug addict could go to dry out but nothing for an elderly person to try to wean off these more common drugs.
Oh well, water under the bridge now. She can't move, still eats, sleeps, goes to the bathroom, still smiles now and then, and still pops out an "I love you" without me asking about every 6 months. I do feel blessed for that.
Nan


Tue Feb 17, 2009 9:51 am
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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NanG,

Good to meet you but sorry it is because of LBD.

How wonderful those 3 little words can make you feel when they come from a LO :) who is in the throws of this or any other terrible disease.

This is only my personal view...but I do think in a 30 day period that was a lot of different drugs to try. Our neurologist will only change one or two meds a month as it takes time to clear some out of the system and give the new ones a chance. But then, each case is different and 2004 things were different also.
Robin is much more educated on meds than I am.

Good luck to you all.

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Dianne C.


Tue Feb 17, 2009 12:42 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Nan,

If it's any comfort, many people with LBD do decline as rapidly as your mother did, without taking any meds. And many people with LBD do "live" with the symptoms your mother has now for many years. (Is that good news or bad news?)

Currently, the two best things to read on antipsychotics are the FDA black box warning on them and the LBDA's instructions for ER physicians (on lbda.org).

Robin


Tue Feb 17, 2009 5:55 pm
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Joined: Thu May 21, 2009 11:22 pm
Posts: 14
Location: Wilmington, De
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Hi, I'm new. Just registered last night just before the forum went down. Rhis is my first post and I would like to address the medicine issue.

I would also like to stress selection of a Doctor. My wife went to 2 different neurologists and a physciatrist and the 2 neurologists were a total waste. They did not exams beyond checking vitals and reflexes. No CT scan, NO MRI's from the first guy. The only thing the first guy offered was a free sample of Aricept. This after he acknowledged that her dementia was not Alzheimer's but he didn't know what it was.The 2nd at least did an EEG. Of course, there were no problems shown there.

The physciatrist treated her for physciatric causes but couldn't put his finger any anything. He prescribed Abilify and Remeron. Let me tell you, Abilify is the worst med you can give to an LBD patient. One of the side effects is that it causes the joints to stiffen and the gait to shuffle. Just what you don't want.

Out of frustration, I took her, undiagnosed, to a neorologist at the Univ of Penna. He is alos a Professor and he runs a lab. In 2 hours, he had a CT scan done, and read immediately, a complete examination and finally diagosed her DLBD. He changed the Abilify to Seroquel and for a while it was OK. My wife also has cancer. The mix of Seroquel and her chemo caused her to be extremely combative. Changed from Seroquel to Reperidone and that has worked since.

The moral to my story? If you have a University Med Center available, use it. You can't believe how many private practice Docs I have had to indoctinate about LBD. Many don't even know about it. 99% of all dementia cases are usually knee-jerk diagnosed as Alzheimer's, and probably 30% of those are really LBD because the Docs just don't take the time to investigate all possilbe causes.

Okay, so there's my 2 cents worth. Now, I will just sit back and see what I can learn that will help me provide a decent quality of life for my wife.


Fri May 22, 2009 9:44 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Hello Jack,

Sorry to meet you under these circumstances but glad you found this site. Great information, folks who have "been there, done that" and know what you are going through. Super place to vent to people who understand.
You are to be commended for being such a strong advocate for your wife. I am so sorry to hear of this diagnosis in addition to the cancer...this is such a very difficult time for both of you.
Your story is very common to a lot of us here. You are so right in having to educate physicians who do not know of LBD. Getting the word out is important. I too had to take my LO to a different doctor when our primary physician told us to "wait 6 months or so." The second GP thought it was PD/LBD but sent us to a neurologist who did a PET Scan and diagnosed PD/AZ. After meeting with a 2nd neurologist ..who is head of Neurology at a University Medical Center we got the diagnosis of PD/LBD. Then it was getting the proper balance of medications.
I am glad you voiced your 2 cents worth as it may be of benefit to others who are new to this dreadful disease. Keep educating yourself and always be on the lookout for new ways to help your wife.
Special prayer for both of you.

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Dianne C.


Sat May 23, 2009 12:03 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Good Morning Jack,
We always welcome everyone's .02 worth, you are so correct in your observation of doctors, my peditrician knew more about LBD than most doctors I took my husband too, That's the reason why the LBDA put together a list of Physicians in some area's and I worked on that project and it was long and still really isn't complete, there are your basic larger cities but as we know not everyone lives close to a big city, there are some states we have very little contacts and then some states we have dozens.
We are glad you joined us and just keep on trying to make things better for you wife, that in itself is a job alone.

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Irene Selak


Sat May 23, 2009 8:02 am
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Joined: Sat Dec 05, 2009 7:24 pm
Posts: 34
Location: Northern Minnesota
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Irene, could you give me the site where the physicians are listed. We live in Northern Minnesota, and I would like to know there are any physicians with in reasonable driving distance. We are about 60 miles north of Duluth, MN. Are there any in Duluth? My husbands neurologist, is leaving her job on the 1st of January, so this would be a good time to change doctors and or clinics if we could find one close by. Any help would be greatly appreciated. Mary 73


Fri Dec 11, 2009 5:51 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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I will send them privately!

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Irene Selak


Fri Dec 11, 2009 9:22 pm
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