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We noticed some mild cognitive issues with my mom three months ago and brought her to a neurologist. She did quite well on his initial cognitive exam. Brain MRI negative. Short EEG negative.



She was living independently, driving, paying bills, shopping, preparing her own meals.



Recently she began having hallucinations - especially of multiple versions of my sister. She then had a tremors episode, and then a full mind-wipe episode. We brought her to the hospital eight days ago.



Long EEG revealed "abnormal discharge" - apparently associated with seizures. She is now on Keppra (anti-seizure drug.) MRI with contrast negative. Spinal tap (aka lumbar puncture) results pending.



Over the last eight days, her entire personality has entirely vaporized. She has morphed into a different person - seemingly dementia/delirium symptoms, but the rapid onset seems too suspect. She barely knows who we are or what's going on at this point and nothing she says makes much sense. I feel like something is being missed.



Any thoughts/advice?



Are there any truly extraordinary specialists out there we might be able to consult with?



Thanks.



Mike

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BeachMike, how are things going?
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Update: My mom was diagnosed with Alzheimer's based on findings in her spinal tap results. She returned home with a full-time home aide and was doing way better than she was while at the hospital and "rehab." She was put on Donepezil.

We noticed improvement over a the span of a few days, but now the delusions / hallucinations have returned again - primarily at night. For this the doctor prescribed Seroquel "as-needed."

We have an appointment for another neurologist opinion, though the spinal tap results look like they are likely quite conclusive in conjunction with the symptoms. We are primarily shocked at how quick the recent decline was.

As much as I knew this is a horrible disease, I probably never truly grasped how devastating and stressful this is on families and caregivers. I get that there is no easy road, though it seems as if it would have been just a little "easier" if there had been a slower decline and if we knew what was going on so we could have at least had time to better prepare and adapt. These have been the most difficult and stressful few weeks my sister and I have ever endured :-(

Thanks for everybody's thoughts, feedback, advice and well-wishes - it's most appreciated.
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Llamalover47 Aug 2022
lbeachmike: Thank you for your update. I am sorry to learn of the diagnosis.
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Geriatric Psychiatrist - perhaps placement in a psych ward for full evaluation.
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She has experienced brain trauma - infection, stroke, poor oxygenation, severe blood chemistry changes... or some other incident - to cause all this change. It most likely is recent. Make sure she is cared for by a neurologist, an infectious disease doctor (if infection is detected), a cardiologist (if heart issues are detected), a pulmonologist (if lung issues are detected). Make sure she is tested for COVID. As an RN, we have seen some cases of encephalopathy linked to COVID infections in the last couple of weeks.
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Please do check for a UTI. They can cause extreme behavior changes. It is shocking how often this is missed.
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It's a confusing medical picture and it seems that you are pretty on top of what is happening....but the picture is murky. Dementia is a symptom of brain disease, some subtypes (Alz, LewyBody) seem to be clear, but in 100 years I imagine the whole picture of brain diseases will be different. Many treatments are tried, and if symptoms improve, that is good. If not, try something else. Seems that she does not have a tumor or brain bleed that caused the sudden change. Dementia can smolder in the brain for a long time, as can seizures (abnormal electrical discharges) that are not visible on the outside of the body. So treating the seizures to see if her brain improves in time is reasonable.
Finding a geriatric psychiatrist (board certified) can help understanding biological influences on behavior, and a neurologist with a gerontology focus or interest can be the most helpful one in trying out other possible treatments. It may take some time, but get on waiting lists for new appts, call weekly for cancellations, etc. Hope your mom regains some of her 'old self'.
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It maybe she fell and hit her head. u said, she had an MRI and it was negative. Have them do a thorough blood work up. it could be medication(s) like interactions with other and also they say grapefruit juice should not be taken with meds if she is. she is 81. i would like to know also the sudden change. Make sure she's eating healthy and drinking lots of water and exercise. I pray ur mom would get better. is she stressed about anything. have the doctor check to see what medications are interacting. please keep us posted i'm curious to know. i find it to sound suspect as well.
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Mike, does mom have a primary care doctor who is looking at all these test results and explaining them to you? That's who would be best at hearing your concerns--a doctor who knew her "before".

It's one of the reasons that folks should HAVE a PCP, in my opinion.
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My mother had similar changes also with seizures a few weeks after the second COVID shot. She is 90 and was living independently. It happened was last Summer.. She had mild covid more than a year earlier. No health issues beyond poorly treated Lyme disease.
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sp19690 Aug 2022
Sorry to hear about your mom. The tragedy is these cases are being ignored. Please don't get your mom anymore shots.
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My 92 year old mom was put on Keppra very similar scenario. Had EEG etc. Turned her literally into a zombie, absolutely no affect and I had to figure out it was from the Keppra and convince TCU doctor to get her off of it. She did return to “normal” a few days later. Made me furious no sign of seizures and because they couldnt explain what happened said it most likely she was having seizures. She wasn’t and isn’t —-so maddening. My mom also has thyroid issues and if those levels are off that can also explain some of this. Keep advocating for her and not settling for answers that don’t make sense.
Also search this site regarding hospital induced delirium. There was a post last week I think. More common than one would think.
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lbeachmike Aug 2022
Thanks JeanMarie - this info is extremely helpful and appreciated. It is amazing that most doctors can't actually do their jobs and we are left sorting out their errors and omissions.
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Check for UTI
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lbeachmike Aug 2022
Urinalysis was negative. We have asked the current care facility to do a urine culture, as was recommended here by BarbBrooklyn.
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So I was doing some research online about the covid vaccine and dementia. Of course I found nothing since anything negative about the vaccine is scrubbed from the internet. But what I did find was dementia escalation in long covid now the question is how many of those cases were vaccinated versus unvaccinated. Is it the long covid causing the dementia and cognition issues or the vaccines and subsequent boosters?
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lbeachmike Aug 2022
There will be lots of questions about the effects of the vaccines that we will not know the answers to for years. I believe it was 75 or 100 years until the effects of asbestos were publicly known.
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This was a finding on the EEG - does anybody know how to interpret?

>> Abnormal EEG due to the presence of occasional bitemporal slowing and mild generalized slowing

>> There are no changes noted from the initial report. There continues to be occasional focal slowing over the left more than right temporal regions; at times the slowing is semi-rhythmic.

Doctor's report states:

>> EMU showed bitemporal epileptiform sharp waves and 
patient was started on Keppra for likely seizure.
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Candyapple Aug 2022
I'm not a doctor but it sounds like with age things are slowing down in the brain. like they said, i guess it's for seizures. I would say on top of this eating healthy is vital. please check out Dr. Klaper Michael (doctorklaper.com) Dr. Neal Barnard on Medicine, Music and Plant-Based Health website and and Dr. Charles Stanley (Intouch.org) Much Prayers.
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I know that you said that her UTI test was negative, but have her tested again.

Also, have her Thyroid levels tested. Check for medication interactions, as well as vitamin or mineral deficiencies.
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Has she been checked for a UTI? My mother would lose her personality and sometimes get angry for no reason when she had them.
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Mike, did they do a urine CULTURE and not just a quick "dipstick" test?
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lbeachmike Aug 2022
I'm not sure how I would know. If I look at the lab results in the hospital portal, is there any differentiation between the two? It would seem unusual for a short-cut dipstick test to be done at a hospital. I know she submitted a urine sample while there. But obviously things could also get mixed up, false negative, etc.
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I had this experience with my parent. Please have your mom checked for a UTI. They’re common in older women and can cause sudden “UTI dementia” if left untreated. The infection in bloodstream causes brain inflammation and can lead to dramatic and sudden personality changes. A targeted IV antibiotic based on urine culture can bring her back after a course of treatment.
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Candyapple Aug 2022
Exactly, this is why i say drink lots of water. not juice all the time. some ppl take meds and sip just a little water. lots of elderly ppl do not drink water. taking meds and just long life still have to flush out our bodies. drinking water is vital period.
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lbeachmike: Perhaps you should check for side effects of her medications, especially the new one and also the possibility of a urinary tract infection.
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lbeachmike Aug 2022
UTI test was negative.
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Time to have her checked out and take some test from her doctor. My mom was the same and now she just smiles and dont know anyone too much. Memory lost with age. Take action now...
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Did she receive a vaccination? They do sometimes have effects.
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lbeachmike Aug 2022
She had three COVID shots. Is there any evidence connecting the shot with dementia?
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In addition to a urine test, do a full panel blood test if she can withstand a blood draw. Specifically, look for low thyroid which is not a normal test requested.

My prayers are with you.
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lbeachmike Aug 2022
My mom only has part of her thyroid and has been on Synthroid for the last 40 years. One of her thyroid counts is low, but I believe by design. They did a thyroid panel and did not seem to find anything that they reported as a concern. Do you have more specific info relating to low thyroid counts? She's had a lot of bloodwork. Are there any other specific tests you are suggesting?
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Make someone do a urine test. Quick changes are very very often associated to bladder infections.
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lbeachmike Aug 2022
UTI test was negative. Does anybody know the chances of a false negative?
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My mother is 101 years old, and went through a rapid deterioration of her cognitive skills. She is in assisted living and the nurses said her vital signs were normal. She went to two hospitals and they found nothing. Then I sent her to a third hospital. They found a rip-roaring bladder infection and hospitalized her for four days. She seemed much better mentally after treatment. Then she went to a rehab place to work on her walking skills because the Assisted Living wouldn't take her back unless she was self-sufficient in moving about her room. Then, while in rehab, she caught Covid and was put in isolation for 10 days. She returned to the Assisted Living, but was a very different person. She was in severe mental decline. She was then moved to the Memory Care (Locked) unit.
I found out later an undetected Urinary Tract infection can cause severe cognitive decline. I talked to a lawyer and he said the Urinary Tract infections can be very hard to find.
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Lulu376 Aug 2022
Those covid tests are brutal. I hope she's okay. Maybe you can decline any further tests.
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Hi Mike, I took care of my mother and she went through a time where she became like your describing your mother. I had to think what was different, what had changed since she was fine to make her become this woman I didn't know, and seemed out of touch. Luckily, I noticed the signs of loopiness and not making sense pretty early and was able to track it back to when the nurse had visited and put my mother on some new medications. No medications were taken off her already 14 pills a day regime, but a new one was added, it wasn't something that was serious and I wouldn't have questioned it if I hadn't started checking what each and every medication she was taking was for. I took the list of medications my mother was taking up to the pharmacist where I got her medications filled and asked him to look at what she was taking along with the new medication added. He took the list and found 3 medications that were not supposed to be administered to a diabetic, heart problem, and oxygen user, and the new medication that the nurse put her on was over 4,000 milligrams what my mother should have been given per day, it did not and should not have been given to my mother. My mom was in the hospital by the time I found the problem, my daughter who was a nurse was sure my mother was going to die and was trying to make sure they didn't put her on life support, she wanted a DNR, do not resuscitate, order put on my mother. I went to the hospital and pulled the nurse in charge of medications aside and told them not to give my mother the medication that was added to her others. At first they told me they had to follow the instructions of the doctors and administer whatever medications he put her on, but I told them the doctor hadn't added this med. it was a nurse, to please research all the meds and they would find that this medication was causing my mother's problems. They did and found it to be true, she was taken off of it, she came back to reality, and everyone who thought she was a goner, was surprised by how clear her thinking became and that she didn't get worse or die, but became her old self again. So, Mike, check the medications, I used the pharmacist because they are trained to check side effects, the use of medications against other medications to see if they are compatible, and they know what they are doing. I hope this helps you, and your mother, medications of all kinds are no joke, some of the fillers they use can cause problems that can injure someone's health badly. Good Luck and I wish you the best.
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Beekee Aug 2022
What was the name of the medication?
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Check for UTI
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Wondering what her dose of Keppra is. In Dec of 2020 I fell down a flight of stairs in the middle of the night (I was responding to my husband who was calling me for help) and ended up in the hospital with 2 broken wrists. I needed surgery to have metal plates put in both wrists and our daughter (and her family) came to stay with her father. She noted that 2 days before my discharge he began acting “weird”, staring at the wall for minutes at a time, not responding to anything, just totally “out of it”. She called an ambulance, and he was admitted to the hospital. The doctors in the ER determined that he was having seizures and put him on 1,000 mg Keppra morning and night (2000mg total per day). He became a totally different person, lethargic, personality changes, memory loss, and worst of all he was no longer able to transfer himself from the bed to his wheelchair or the toilet. I was at my wits end and contacted his doctor to discuss the changes I noticed but he really believed he needed the Keppra and did not want to lower the dose. I finally took him to another neurologist (who specializes in movement d/o and dementia) who weaned him off the Keppra because, after looking at his medical records and EEG, she didn’t believe he had ever had a seizure. I’m not saying this is the same for your mom, but I would look at the Keppra dosage and if it seems high get a second opinion.  If she is having seizures, there are other medications you can try. I wish you luck in this journey, it isn’t for the faint of heart. (Just for comparison, my husband is 6 ft tall and weighs 185 lbs, our new neurologist said 2000mg was too much for him to metabolize).
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lbeachmike Aug 2022
My mom was put on 1000 mg/day of Keppra, which appears to be the minimum dose. However, we have found in the past that she is very medication-sensitive. In the past she had significant hallucinations from pain meds. It is worth noting that we observed decline before the Keppra. It is just that the decline massively accelerated around the time of the Keppra. No seizure was ever observed. My mom had two or three prior episodes - one where she had uncontrollable shaking hands, and the other where her mind totally went fully blank and she could not remember anything for a short period of time, another where she fell while making the bed and could not remember what caused her to fall. So because there is no definitive evidence of a seizure, perhaps she does not need to be on this med. I'm not sure if you need to taper from 1000 mg/day, since it appears to be the minimum dosage. I'm not sure if there are any potential rebound effects.

The EEG showed "abnormal discharge" which we were told can be an indication of potential seizures, which is why they put her on Keppra. Additionally her mom had seizures, so there was family history.

The "abnormal discharge" was still observed after being on the Keppra. I'm not sure exactly what that observation is telling us.
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Having worked in healthcare over 30 years I have observed all of what has been mentioned regarding care and communication. Insist the best from your doctors and if they are condescending or rude get another doctor. Teaching associated hospitals are the best. Expect back what you give. A good doctor will be glad that you are educating yourself. Remember that if you go to a smaller town/city for care you will be getting care from good people BUT they don't have the numbers behind them. In a teaching facility they have it. You can ask your doctor anything and tell them anything. I wish you the best with your mom and it is obvious you love her very much. You may have to accept the "new" mom someday and if you continue to love and support her it will be good for both of you.
I am not bashing the medical system. We are lucky to have so many well educated doctors, nurses, office staff and building staff. My personal goal is to treat them all with kindness and respect and still be in charge of my care.
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katepaints Aug 2022
You're very right to suggest going to a teaching hospital. The odds of getting more knowledgable doctors is better. It is not unusual to get a second opinion from one of these hospitals. Sometimes a local doctor will recommend going to see a specialist at a teaching hospital. The local doctors may be very good but simply not seeing patients like your mom as often as doctors in teaching hospitals. The more patients, the more experience with the particular problems. It's not insulting to get a second opinion. It's your mom's health!
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I took Mum to hospital for what doctor thought could be stroke as she suddenly made no sense (words were dribble) and earlier she’d complained of headache and weak arm. Hours later at the hospital she was deemed to have a severe UTI and we went home with antibiotics. But in your case, I’m sure they would have checked for this as standard if she’s been at the hospital.
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lbeachmike Aug 2022
Given the propensity for UTI's or other infections in the body causing these types of cognition symptoms, is there anything wrong with treating with antibiotic in the event that something was missed? I believe there are certain very broad-based antibiotics that cover a very wide range of bacterial infection.

Yes, they did test for it and the test was negative. But no test is perfect and somebody else commented here that they can sometimes be hard to find.
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There are many things that can affect one's cognition, especially as they age. I would ensure she's not suffering from a UTI, also as folks mentioned, check her medications - any change can disrupt her vitals and that would lead also to change in cognition. My father has vascular dementia, and unlike for example Alzheimers, his cognition can come and go depending on how well his A-fib is under control. Essentially if his heart isn't working well, it affects blood/oxygen circulation to the brain which means his cognition is disrupted. If your mom suffered from seizures that too of course can affect cognition as the neurons are misfiring. It's a lot to handle so good luck... keeping seniors healthy can often be a difficult balancing act as their health wanes and you try and find how to get that precise stability with their meds.
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I just had a conversation with a dear friend about this very subject. His 80 year old brother underwent a sudden personality change along with severe dementia symptoms (paranoia, confusion, memory loss, etc.) After many visits to the hospital and doctors, neurologists, psychiatrists, etc. he was diagnosed with dementia related to Long Covid. He is expected to improve with time. If your loved one has had Covid recently, that might be worth looking into.
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lbeachmike Aug 2022
She was negative for COVID antibodies.
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