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Re: Re: Depakote

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Thanks Stacey! He did say we'll have to start out with checking his blood

monthly, then every three months to make sure it's not affecting his liver.

We did monthly when was an infant to make sure his phenobarb levels

were in the right place. Luckily my kids are pretty decent about blood

tests. He said it should help with his impulsivity too.

Sue

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  • 9 years later...
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Hi danspencer and group

I respectfully can say that The former use of Depakote used for agitation has

been disproved !

I don't have the exact reference for this but it is in the literature.

Nevertheless, spolaroid how is your mom holding up? Hope she is doing better and

you are resting easier! Your previous posts show a deep dedication to your mom!

Something u should be proud of!

Best,

Judy R. Strauss LMSW PhD

Lead Faculty

University of Phoenix

Jersey City Campus

100 Town Square Place

|Jersey City, NJ 07310

Direct Cell-

Email- Jrstr@...

> Depakote and Tegritol are also antisizure medications that are frequently

prescribed to anyone emotional or behavioral extremes for any reason ... they

are quite effective in reducing emotional outbursts for any people exhibiting

problems. Your previous answer was uninformed.

>

>

> >

> > > My 87 year old mother was diagnosed with LBD in April, we moved her to be

with me, her daughter in May. I have the most time of all of my 8 siblings. I

dearly love my mother and want to do what is the best for her. I was working to

clear the hurdles of changing insurance policies (as she was disenrolled from

hers due to the move to a new state), finding a primary care physician and team

(our initial appointment was for August 17) and obtaining power of attorney in

order that we my be able to begin to use her long term care insurance benefit

for home health care and companionship. All of this was a tedious process in all

the ways I've been reading about through posts on this site.

> > >

> > > My mother fell on Sunday, seemingly fine until Wednesday when she reported

dizzyness. As it turns out, she has fractured the dens, or odontoid process on

C2 vertebrae and why she is still alive, who knows.

> > >

> > > She spent two terrible days in a comprehensive care unit and is still in

the hospital, now on the neurology floor and doing much better. She is walking

about in a cervical collar after the family and Mom and doctor (in consensus for

once) opted out of the halo.

> > >

> > > She is being seen by a neurosurgeon who is very forthcoming about the

inevitability of her death with another fall, provides detailed information and

very willing to work with us on the spine issues as we decide upon whether or to

she should have surgery to insert a screw. This may buy a little time. I debate,

as many of you debate in your heart, is additional time what she needs given the

long slow prognosis for her Lewy Body Dementia?

> > >

> > > She was also assigned, in the absence of a primary care physician, a

hospitalist. He had orders written to begin her on Aricept and Depakote last

night. I had no idea, and neither did my sister, who had spoken with him

yesterday (I did not meet him until today) regarding his intentions. I thought

we'd begin the medications when we weren't dealing with a broken neck and all of

these other issues. His reasoning is, why wait? He claims that he did speak of

it with my sister, although her understanding of it was not the same as his.

> > >

> > > I am quite confused trying to muddle through all of this process. I don't

object to starting the Aricept now. I would like to learn more about the purpose

of the Depakote. My mother is not yet agitated and combative, and as you all

know, can be very cognizant on her good days and during show time.

> > >

> > > After a long day (after a very short night) of dealing with this issue, I

am at a loss. My mother, who seemed to be unaware of this as it was unfolding

said with the most clarity she has had since the fall said, " The very worst part

of all of this is that everybody stands around arguing about what should happen

to me and they don't know what they are talking about. If they want to know they

should ask me. " I immediately told her that she was absolutely correct. I

started with " Mom, I need YOU to tell me what choices you would make. First we

need to make a decision whether or not you begin taking a medication that could

improve your dementia symptoms but may have some side effects, like diarrhea " . I

was really hoping that just providing two choices, reasonably clear cut, would

elicit a response, and then she fell asleep, that kind of sleep that seems like

her brain just hit sensory overload and turned off temporarily.

> > >

> > > Anyway, I'd like to buy some time on the depakote issue and learn more

about it. What are my rights in asking them to please wait on the medication? I

now have durable power of attorney but her medical power of attorney is a sister

in California from a document drawn up in 2005. A brother in Arizona is next in

line. I'm in Colorado

> > >

> > > By the way, these doctors prefer to stand beside her hospital bed and

speak of her time left and the expectation that she will fall and break

something, if not her neck soon. How do I politely ask them to consider being

kinder if not gentler in their presentation of this information to her?

> > >

> > >

> >

> >

> >

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Hello carol

It was so nice to get this email from you this evening !!

Everything you say ( and u write very clearly / ur thoughts are well organized )

sounds positive and like you are moving in the right direction with moms care!

As far as the med go - gee am I ever happy for you that u resisted moving

forward on the Depakote - I think our parents generation had an image of " the

doctor is always right " while we younger folks aren clear that medicine is not

always the answer and asking a question about the meds especially with lbd is

smart- given how few doctors seem to know much about the disease! certainly a

strong drug such as Depakote may have put your mom in a worse place- isn't it

Amazing that often Tylenol can do the trick ?! By the way with LBD you should

not use Tylenol pm as the effects can be bad!

It is also nice to see that you and your sibs can agree to disagree on certain

personal issues but that when it comes to mom the

Family rallies to care for her as a unit! This

Speaks volumes about your mother and also about you and your sibs!

Carol- how uplifting Your mom has a good sense of humor - a plus in Any crisis

- don't be too pessimistic about the fracture - rehab centers can work miracles

sometimes even in the worst of cases!

Keep us posted and god bless u!

Judy R. Strauss LMSW PhD

Lead Faculty

University of Phoenix

Jersey City Campus

100 Town Square Place

|Jersey City, NJ 07310

Direct Cell-

Email- Jrstr@...

> Hello Judy and thank you for your kindness and support..

>

> Mom is in a skilled nursing facility for rehab, 1-3 weeks perhaps and then

home care. When we asked which she would prefer, she promptly answered that she

would rather be home because the birds in her backyard(which she loves to watch

for hours on end) do not make difficult physical demands.

>

> The fracture at C2 now becomes our largest worry and is what will likely

ultimately take her life. If the cervical collar is irritating her in the night

then she pulls at the velcro attempting to take it off. I am certainly going to

be hiring as much skilled care for assistance when she is back at home. I have

found that simply having her take a small amount of tylenol reduces or

eliminates those agitations caused by irritation of her collar, clothing, etc.

>

> I have never been happier to buy time as when asking them to not begin the

aricept and depakote. My mother does not have seizures and is not

manic/depressive. In fact, the neuropsychologist who administered tests before

hospital discharge could not believe that even after the fracture and the

dementia diagnosis, of which she is now more aware, she was not unhappy, angry

or feeling negative. She told him that she had good outcomes from previous

injuries and did not seem to think this would be any different. We are to see a

far more conservative (with medications) physician while in the hospital and

will probably begin the aricept in a controlled and stable environment, while

she is there but I still have no idea why he insisted we begin depakote. It

showed up on the list of meds at the SNF as well, his discharge orders, and we

stopped it again.

>

> When we entered the rehab facility my younger sister informed my Mom that

everybody who went there would get a coupon for a free haircut to which mom

replied " Good, you need one. "

>

> The best part is, the family is hugely cooperative and supportive. We don't

particularly all get along or agree on much, we are not close but we all love

our mother and want the best for her. Insurance and directives are being

resolved, perhaps not for the best but resolved nonetheless.

>

> I appreciate all of the information, it gives me a place to continue the

research.

>

> Carol

>

>

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