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I would do anything for my Mom and if it was suggested by Neuro, I would try it for at least a month to see if it would help. One step at a time before making the decision to put her in ALF.
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My 1st response disappeared. I'd get at least a second opinion. I am 85, worked full time to 83 and have no idea why I am taking 7 drugs daily, even though I have a Licensed Clinical Social Worker background, can pass exams (but can't get a job). Maybe I am paranoid but all this money going into the drug market concerns me.
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My mom became very delusional and violent. Risperdone was a miracle for us and is keeping her symptoms in control and she is now able to live with us.
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Risperdal really tamped down the delusions, extreme paranoia, and occasional hallucinations for my mother-in-law. She was in a constant state of high anxiety, fear, and anger. I think she might be in a mental institution right now, because no one would be able to deal with the extreme behaviors. She still has many memory loss issues, but is much calmer and happier now. Her neurologist started with a very low dose and increased it slowly over a couple of months until the dosage reached the point where it made a significant difference. We kept a close watch for side effects, but there were none.
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If your LO does go on Seroquel, please start with a small dose. Then have the LO monitored as time goes by to see how well she's adapting to it and if suggested, that the dose be increased.
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Thank you all for such great insight and information. It seems like the medication helps a bit for most, but only time will tell. We have taken her off all of the PD drugs that are known to cause hallucinations (mainly Mirapex---that was awful for her over time). I know that Nuplazid is out there for PD, however, since it has only been approved in 2016--we did a quick cost analysis and if there is no insurance coverage (Medicaid), it would come out to approx. 30K a year for Nuplazid... Seroquel would be much less (as it has been around for some time). We are aware of the 'black box' warning, and this is definitely something to take into consideration...but some of the hallucinations really scare her (people in her room, bugs in her bathroom, people watching her in the shower, etc.). We will try it and go from there. Also, thanks for the info about the oils and homeopathic. that may be a great option as well. Thank you so much! I appreciate the support.
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I would suggest also having her tested for a Urinary tract infection. My Mom (92) was prone to these and we could always tell she had one when she would report hallucinations, and express weird fears. She also has dementia but UTI's added the other dimension usually. She regularly takes Cranberry juice and supplements now and is much better now.
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Thanks milesaway! We do that constantly... we definitely saw that last year. She is on cranberry supplements as prescribed by her urologist:) at this time we have ruled out uti... sigh
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anne1933 - I am perplexed by your comment. If you have "no idea why I am taking 7 drugs daily", perhaps you should ask your doctor what all these meds are for and why you need them? If your doctor won't help with this, then follow your own advice to the poster of this comment "I'd get at least a second opinion."

Several times when I was much younger I have had doctors insist I need to take medication. When there is an alternative, I am all for that! One instance was for cholesterol - ditching processed foods and getting a bit more exercise took care of that without medication. The next was Fosamax for osteoporosis - I looked it up and read several articles about it and there is NO way anyone will get me to take that (or any of the other brands, they are all pretty much the same!) I was thankful I did know about that one when a vet wanted me to give one cat this crap. The alternative I found online with an Endocrinologist Vet was to eliminate the dry food (chow, kibble, whatever you want to call it.) THAT solved the cat's problem too!

Bottom line is I currently take vitamin D (stopped the calcium they pushed long ago as that can also cause more problems!) and 2 aspirin. That is it.
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I mother has been on 25 mg of Seroquel for about a year and a half. She sometimes has jerking movements and they say it is Myoclonus. I read that one person on here posted that one of the side effects is jerking movements. We had her to a new neurologist last week and he said when she does that to give her a tiny bit of Seroquel to relax her. Problem is it acts like a sleeping pill and we don't want her to be drowsy during the day… I read that one person on here posted that one of the side effects is jerking movements. We had her to a new neurologist last week and he said when she does that to give her a tiny bit of Seroquel to call her… That medication is scary to begin with when you read what the side effects are in the elderly. You really don't know what is right and what is wrong…
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Seroquel is widely prescribed in regular and geriatric psych wards for hallucinations/delusions and in the dosages Glad stated. They are monitored regularly and if not effective, they are discontinued.
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I have the same question (s) about all medical diagnoses and medications. But my thoughts are based on having been incorrectly diagnosed and treated with inappropriate medications. It took six months for a diagnosis to move from stroke/heart attack to seizure disorder and I made the diagnosis, another 6 months to convince three doctors ( a GP, Cardiologist and a Neurologist) to seizure medication which is preventing me breaking bones and falling several times. But health care hopefully is better except in rural areas. But since doctors can hardly expect to be perfect since they only get 15 min for every appointment. My GP has an alarm which tells her "time up." I cry for the next generations because if things don't change it will get worse. I was in hospital for 6 days without a bath.Anne1933
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Anne1933,

I understand your frustrations. My mother last July asked to go to an Urgent Care Facility one Saturday as she has bloody and painful urination and knew she had a UTI. Jumping forward two weeks she got a call from the Urgent Care Facility that they gave her the wrong antibiotic and she needed a different Rx. The next day after her first dose she awoke with chest pain. Being a cardiac victim (her and I) I went for nitro to which she said they were bad. Ended in a ED DX as GERD due to new antibiotic. Jumping three more days Mom had been back to ED for the third time, all three different medical reasons I noted with talking to PCP. This third visit the Facilty Attending ED MD said “the family has know your mother has had full blown dementia for YEARS!” The next two weeks the PCP and Neurologist examines and confirmed that they could state Mom did not have cognitive issues from as little as two weeks(PCP) and three months (Neuro), but something drastic had occurred! A month later we moved as planned, with a stroke while arriving the old home town. Again, different hospital where doctors and staff would not click the button that said careeverywhere, they DX Mom as having Full Blown Dementia. Months later a Full Neuro Psych exam was performed to DX NO DEMENTIA, but some form of cognitive impairment. The old doctors felt there was a medical condition the new hospital has given up searching for the root cause and presumes the causes are done from the stroke while moving. But the old doctors had already DX Unknown Altered Mind State in a matter of a few weeks! Mom is not the same Mom I had last June 2017. I am frustrated as the old Neuro said that their are a few medical conditions that can mimic dementia and once DX and treated that the altered mind state may clear up. The New Neuro says she is going to attribute this as a stroke that only affected her mind and not walking etc.

Bless you and best of luck!
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CaringSon2, it really can be frustrating to deal with several different doctors!

I can give you a little information on one of your frustrations. A UTI is diagnosed in two stages. First a very quick "dipstick" test is performed. It is inexpensive and fast, but not absolutely accurate. If it shows there may be an infection, the patient is started on a general antibiotic. Meanwhile, a culture is run on the urine. This generally needs to be sent to a special lab, and the culture needs to grow for a few days. When it comes back it will reveal exactly what bacteria are involved. This may result in a change of medications, to one that is specific to that particular bacteria strain.

So the common pattern is
Do a quick test.
If bacteria are present, prescribe an antibiotic.
Get a culture of the urine (which takes a few days)
If appropriate, change antibiotic to address the specific kind of infection.

I don't think your mom was "given the wrong antibiotic." Rather she was treated immediately but when more data came in, they switched her to a more effective med. I've gone through this with my mother, and recently myself.

A UTI is definitely one of those conditions that can mimic dementia symptoms, in people older than 65.
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They put my mother on a combination of aricept and namenda and it worked great. However I feel the doctor over prescribed the amount so don’t be afraid to start lower and work up with your doctors help
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just to address the Nuplazid suggestion- There are now reports of a few too many deaths as a result from taking that one. I believe it was in older patients but not positive. May want to do a little research on that one. If I remember correctly it was passed thru too quickly.
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I feel like it either helps or it doesn't. Helped my mom a lot. She was accusing my sister and me of being part of a drug related gang. This is gone as were the strange things she saw. She did see a bird in the bathroom the other day, but, hey, I can live with the occasional bird, just not the gang thing.
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When this happened to my Mom, we tried a Nemenda and Aricept, both gave her bad side effects, diarrhea, and worse delusions. So neuro suggested Depakote. Started with 250mg, then was able to decrease to 125mg/d and delusions pretty much stopped and mood stabilized.
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My father has Alz and is in stage Six. He is not a problem patient! Almost a year ago, after my mother requested to move back to WV after 3.5 years in Charleston SC and my bringing her to WV and selecting a home to buy, she suddenly became afflicted with a Dr Jeckle Mrs Hyde syndrome. It was like a light switches being clicked off to her brain. She went from “sick at her stomach” to “chest pains” to being found passed out in the bathroom floor (suspicion of newly found Epilepsy Seizure Medication under tritrated) to full blow Hallucinations and Full Blown Incontenance over the course of Four days. PCP and Neuro disagreed with Hospitalist Physcians she had full blown dementia! As the PCP had seen her two weeks earlier and Neuro saw her 10 weeks earlier!

Hallucinations got worse, but I found several drugs that had been administered or re-administered the 30 days prior to the Hallucinations onset. I am and the new town doctors remove 5 drugs and or modified to lower Non-Long Acting Drugs. At first I saw, and Mom, saw major decrease of Hallucinations etc.

Recently Mom was admitted to Hospital, where they could see the January Psych Evaluation where she was clinically diagnosed (Jan 2018) as NOT Having Alz and or Dementia!

While in the hospital she became a problem patient and they started Zyprexa which made matters worse, Hallucinations etc! Prior to the Zyprexa they tried Trazadon with no success. The doctor would not listen to the nurses whom told the docs to try Remeron (Mirtazipine) (per the family knowledge of successful medications) at 1/2 the lowest dose 15mg (giving her 7.5mg near bed time). Since she has returned home I have started Trazadon around 1-2 p at 1/2 low dose. Then at Bed time I give the Remeron at 7.5 mg. As the side effects of increased desire to eat are also a benefit due to her being down to 87#’s in addition of the sleepiness it cause is a plus and it decreases OCB problems (a big plus in my mind).
I find this cocktail works better, not that she accused me of trying to poison her with meds today when she said she was sick at her stomach, which I presumed was a combination of her having indigestion (GERD) and lack of eating!

Mom’s Geriatric Psychiatrist went to the hospital and told the hospital doctors to stop administering Zyprexa, which they disregarded.

I have no majic answer, just the road I have been down!

Best of Luck to you and my prayers to you!

Bob
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