Re: drugs used to treat/Freda

[Guest guest]

Below is from the LBD Caregiver's files:

http://health.groups.yahoo.com/group/LBDcaregivers/files/Medications/

 

 

BAD LBD MEDICATIONS

One of the symptoms of LBD is extreme sensitivity to many medications.

NEUROLEPTICS AND OPIATES ARE LIFE THREATENING.

DO NOT GIVE:

Haldol, Clozapine, Morphine, Demerol or any other neuroleptics or opiates.

All medications ending in " azine " may cause neuroleptic malignant syndrome.

AVOID:

Zyprexa/olanzapine

Risperdal/risperidone

Ativan/lorazepam

Mirapex/pramipexole

Eldepryl/selegeline

Ambien/zolpidem

Ultram/tramadol

Detrol & Detropan

Benedryl (OTC allergy medication)

　

USE CAUTION:

Dilantin....extremely careful monitoring of levels is needed.

Sinemet/carbidopa-levodopa may cause increased dementia, stiffness, and

hallucinations.

Cough and Cold medications

　

This is not a complete list of medications, which may cause serious consequences

in LBD patients. Bad reactions to strong antibiotics, for example, are not

uncommon. LBD patients who have been given the least medications, seem to do

better in the long run than those who have been more medicated.

Unfortunately, the LBD patient never goes back to the level of former

functioning when the troublesome medication is removed, and sometimes as with

neuroleptics, there may be no recovery.

LESS IS BEST ... and safest.

Hi I need more information on my mother who was diagnosed Dec. 2 with lbd and

she has remained in the Hospital.  It has been 20 days now and she is still

declining. She walked into the hospital and was talking and had been taking care

of her self.  She was hospitalized for hallusenations. She was put on many

psych meds and ativan, tylenol and methadone. She is now in Hospice and they

have dc'd everything except pain meds.  I have asked for a second opinion and

want her transfered before they kill her. I'm at whits end not knowing what to

do. any suggestions. The doctors say that she has declined fast for some reason

but they do not know.  I talked to someone from Mayo and they had never head of

anyone being diagnosed and dying in 20 days.  A list of meds that she has been

on and some at the same time:  Clonapin  abilify  respirdol  ativan 

dyprexa seraquel  halodol  depakope  morphine  methadone tylenol  She may

have been given more.

Freda 

------------------------------------

Welcome to LBDcaregivers. 

[Guest guest]

If

 

 

If you already received this I'm sorry. I found it in my drafts for some reason.

 

Below is from the LBD Caregiver's files:

http://health.groups.yahoo.com/group/LBDcaregivers/files/Medications/

BAD LBD MEDICATIONS

One of the symptoms of LBD is extreme sensitivity to many medications.

NEUROLEPTICS AND OPIATES ARE LIFE THREATENING.

DO NOT GIVE:

Haldol, Clozapine, Morphine, Demerol or any other neuroleptics or opiates.

All medications ending in " azine " may cause neuroleptic malignant syndrome.

AVOID:

Zyprexa/olanzapine

Risperdal/risperidone

Ativan/lorazepam

Mirapex/pramipexole

Eldepryl/selegeline

Ambien/zolpidem

Ultram/tramadol

Detrol & Detropan

Benedryl (OTC allergy medication)

　

USE CAUTION:

Dilantin....extremely careful monitoring of levels is needed.

Sinemet/carbidopa-levodopa may cause increased dementia, stiffness, and

hallucinations.

Cough and Cold medications

　

This is not a complete list of medications, which may cause serious consequences

in LBD patients. Bad reactions to strong antibiotics, for example, are not

uncommon. LBD patients who have been given the least medications, seem to do

better in the long run than those who have been more medicated.

Unfortunately, the LBD patient never goes back to the level of former

functioning when the troublesome medication is removed, and sometimes as with

neuroleptics, there may be no recovery.

LESS IS BEST ... and safest.

Hi I need more information on my mother who was diagnosed Dec. 2 with lbd and

she has remained in the Hospital.  It has been 20 days now and she is still

declining. She walked into the hospital and was talking and had been taking care

of her self.  She was hospitalized for hallusenations. She was put on many

psych meds and ativan, tylenol and methadone. She is now in Hospice and they

have dc'd everything except pain meds.  I have asked for a second opinion and

want her transfered before they kill her. I'm at whits end not knowing what to

do. any suggestions. The doctors say that she has declined fast for some reason

but they do not know.  I talked to someone from Mayo and they had never head of

anyone being diagnosed and dying in 20 days.  A list of meds that she has been

on and some at the same time:  Clonapin  abilify  respirdol  ativan 

dyprexa seraquel  halodol  depakope  morphine  methadone tylenol  She may

have been given more.

Freda 

------------------------------------

Welcome to LBDcaregivers. 

[Guest guest]

Freda, this is written by a research doctor of LBD:

http://www.lbda.org/content/lbd-requires-comprehensive-treatment-approach

if your mother's doctor needs to see something written by a doctor on

medications. (See Below)

 

My husband's neurologist was happy to get this link for LBD updates from

doctors.......

http://www.lbda.org/

 

LBD Requires a Comprehensive Treatment Approach

01/01/2006

A Comprehensive Approach to Treatment can Significantly Improve the Quality of

Life of Patients with the Lewy Body Dementias

by Bradley F. Boeve, M.D.

Lewy body dementia, like Alzheimer's Disease, is not preventable or curable, but

by focusing on what we CAN do, rather than what we cannot do, there is much that

can be done to allow your patients to enjoy a higher quality of life. In fact,

LBD patients tend to have greater cholinergic deficits but less neuronal loss

than AD patients, so there is more potential for improvement and/or

stabilization using the cholinesterase inhibitors. Additionally, there are good

medications for many of the behavioral features of LBD.

In our experience, many LBD patients enjoy significant improvement with a

comprehensive approach to therapy addressing cognitive, neuropsychiatric, motor,

sleep, autonomic, and other medical issues, and many have remarkably little

change from year to year. Clearly, not all patients experience this improvement

and slowly progressive course, but for many LBD patients (especially those with

little atrophy on MRI), the neurotransmitter deficit appears to drive the

illness more than neuronal death. Such patients can improve with therapy,

sometimes markedly, and do quite well, all things considered, for many, many

years. Perhaps it is the lack of a comprehensive approach that many have not

seemed to benefit. Perhaps there are biologic differences between different

patient populations that lead to differences in the clinical course, etc. We in

the LBDA firmly believe an aggressive and comprehensive approach is necessary

with LBD patients, especially early in

the illness, and some clinicians may not take that approach.

It pains us greatly to think of the LBD patients who see physicians who have the

all-too-frequent view that " this patient has dementia, none of the drugs work so

there is little to do, so get your finances in order and plan for a painful next

few years when you won't recognize your family, will need to live in a nursing

home..... " This is the view of so many MDs, including neurologists and

psychiatrists, and it is our (LBD specialists) obligation to educate the public

and the medical community that LBD is very different than AD, and it is

absolutely unacceptable to do nothing or take a nihilistic approach. We must

also maintain realistic optimism, since there is almost always

something we MDs can do to affect quality of life - through medications,

education, counseling, behavioral modification, etc.

Encourage your patients' caregivers to become good detectives, by carefully

studying and identifying medications and other interventions or environmental

factors that influence the LBD patient's function/fluctuations.

We are seeking to promote knowledge and understanding that LBD:

* is a relatively common form of dementia;

* is recognizable to the educated eyes;

* can respond to cholinesterase inhibitor +/-psychostimulant therapy, sometimes

* dramatically;

* should not be exposed to conventionalneuroleptics;

* quality of life for patients and families can bereasonably good for many

years.

Bradley F. Boeve, M.D. is an Associate Professor of Neurology, Division of

Behavioral Neurology and Sleep Disorders Center Department of Neurology, Mayo

Clinic College of Medicine, Rochester, MN.

________________________________

A Note from LBDA:

One example of how a comprehensive approach to therapy can yield very positive

results can be seen in a recent video clip produced by the Mayo Clinic,

featuring Dr. Brad Boeve, one of our Scientific Advisory Council members. Dr.

Boeve and his colleagues at Mayo Clinic interviewed a patient and his wife 

http://www.medicaledge.org/2005march-1.html), who is representative of the

sometimes dramatic improvement one can see when a team of clinicians take a

comprehensive approach toward therapy, and a patient and caregiver address

several important non-medication issues.

Mr. R was confused, paranoid, delusional, hallucinatory, and his wife was very

frustrated by the dramatic changes in her previously high-functioning husband.

The patient's neurologist, psychiatrist, and internist worked toward

establishing the diagnosis, and he improved significantly with Aricept, but his

hypersomnolence, sleep attacks, and delusions and hallucinations persisted to

some degree. He was then commenced on Provigil, and the next day his

hypersomnolence improved and his sleep attacks, delusions and hallucinations

stopped, and have been almost nonexistent now for well over a year.

He is also receiving treatment for his parkinsonism (carbidopa/levodopa), a

sleep disorder known as REM sleep behavior disorder (clonazepam), and depression

(bupropione). His internist is optimizing management of his diabetes, atrial

fibrillation, and chronic need for anticoagulation. He and his wife also remain

physically and mentally active, do water aerobics, spend quality time with

friends and family, and maintain an excellent sense of " realistic optimism. " He

is not neurologically normal, but he and his wife have an active lifestyle,

enjoyed a cruise a few months ago (which would not have been possible prior to

these therapies), and this clinical improvement and stabilization and desire to

educate the public were their motivations to do this video.

More information on REM sleep behavior disorder can be found at this link

(scroll down to video segment B047, and click on video):

http://www.medicaledge.org/2001novembervideo.html#3

 

 

 

 

 

 

 

 

 

 

 

 

Here is a Medication Warning Card to hand out on Medications:

http://f1.grp.yahoofs.com/v1/4Pn0Tk6JPfxO5FM6qqcwjIm-x9naPh3z_WkbmQ9XwBeRyF_r3r2\

Q6yN96bPb5JrrKvZe1NzEGJfAU_fv_ALioZr69V9ajKp-fI8/scan0044.pdf

________________________________

To: " LBDcaregivers " <LBDcaregivers >

Sent: Friday, December 23, 2011 7:31 AM

Subject: Re: drugs used to treat

I did give them the list and he said are they doctors? I " m having her transfered

to IU  when a doctor will take her and a bed is ready. I know that all my mom's

problems started when she was given so many psychotic drugs while trying to

manage her hallucinations.

________________________________

To: LBDcaregivers

Sent: Friday, December 23, 2011 10:07 AM

Subject: Re: drugs used to treat

 

Can you print the bad meds list and give it to them?  You will need to advocate

for you mom and insist that they stop all meds now.  Even with the right meds

our loved ones continue to have hallucinations.  I see no reason to drug her

like this.  Best of luck to you and your mom.

Courage

From: Freda Hodson

Sent: Friday, December 23, 2011 7:02 AM

To: LBDcaregivers

Subject: Re: drugs used to treat

She is at Community Hospital East in Indianapolis.  She walked in and now she is

bed-ridden, can't feed herself, in continent, in Hospice dieing. How can I make

them listen to me about the drugs

________________________________

From: Mayhew <mailto:pmayhew53%40gmail.com>

To: mailto:LBDcaregivers%40yahoogroups.com

Sent: Friday, December 23, 2011 12:40 AM

Subject: Re: drugs used to treat

I am so sorry to hear about this treatment of your mother.  Many of those

medications you mention are not supposed to be used in treating LBD.  You

need to get your Mom out of that hospital and to Mayo Clinic or some really

good medical center that KNOWS how to treat LBD, or you may soon lose her I

fear.  This is just terrible!  May I ask where and what hospital she is

in?  Please get your mother to a better place.  Haldol and methadone

especially are very bad and can do harm that can be irreversible.  You say

you talked with someone from Mayo Clinic.  Can you take your Mother there

right away?

Prayers are with you and your Mom,

Pat M.

On Thu, Dec 22, 2011 at 7:21 PM, Freda <mailto:fredahodson%40yahoo.com> wrote:

> **

>

>

> Hi I need more information on my mother who was diagnosed Dec. 2 with lbd

> and she has remained in the Hospital. It has been 20 days now and she is

> still declining. She walked into the hospital and was talking and had been

> taking care of her self. She was hospitalized for hallusenations. She was

> put on many psych meds and ativan, tylenol and methadone. She is now in

> Hospice and they have dc'd everything except pain meds. I have asked for a

> second opinion and want her transfered before they kill her. I'm at whits

> end not knowing what to do. any suggestions. The doctors say that she has

> declined fast for some reason but they do not know. I talked to someone

> from Mayo and they had never head of anyone being diagnosed and dying in 20

> days. A list of meds that she has been on and some at the same time:

> Clonapin abilify respirdol ativan dyprexa seraquel halodol depakope

> morphine methadone tylenol She may have been given more. Freda

>

>

>