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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My mother--same story. Diagnosed with Lewy Body Dementia. Statue-like behavior, came up in the midst of the Pandemic. Her executive functioning skills were basically, like a robot. Started out with a "one-time" major hallucinations. Who is this person that changed overnight?
(3) hospitalizations later, short-term rehab stint, (3) rounds VNA care, along with the "right" medication Mom can now walk the supermarket with an UPWalker Lite. Gray walker used at night for bathroom.
Mom is sleeping now, again. The sleeping is part of it. Her symptoms fluctuate. At first, we didn't know what to make of it, a totally different person.
My siblings and I were beside ourselves. We prayed, cried and were in a state of constant worry.
Agree about the over-prescribing but remember which meds to stay away from should your mother have LBD.
The chronic UTI's which were never an issue have subsided along with adding a toilet with railings NOT the booster seat as you can't wipe as easily.
Shower chair with shower nozzle and railings can be installed in the bathroom. Get a scrip from your Mom's PCP and get on the portal and build a relationship with the PCP. All the medical equipment can be covered by insurance.
The Geriatrician neuro-psy docs check out their credentials online. Check out ALL of your mother's docs on your local State Medical Board. If you don't like what you see, drop them and transfer all records. Some Psychiatrists were nuttier than the people with problems--again check them out.
Teepa Snow has great YouTube videos on all types of dementia. My mother's peripheral vision was the first thing to go. The first thing I noticed. She would walk behind a car that was backing out in a supermarket parking lot. Teepa Snow said it's like wearing scuba diving goggles and you can't see on either side, just straight.
Don't let the docs torture your mother. If you have a "home" blood draw don't have them come and draw blood, Tu, Wed, & Thurs. Find out what is necessary and do "one" blood draw. Ask for what you need and be thorough.
My mother switched from Warfarin to Eliquis (more $$$) but less invasive.
The nightmare we lived 2 Summers' ago today Mom is a different person but you are going up against old age. Mom also has a-fib and non-hodgkins lymphoma. Once their 80 there are "multiple" health problems.
Good book: My Name is Kevin not Lewy--written by a man from Ireland who has LBD. Check out online videos "Lewy Body Ireland"
Someone with LBD needs structure, routine, early-to-bed, limited tv, nutritious meals, lifeline button, call internet provider and put an app on your phone and a camera at the door should Mom leave dwelling.
White cotton underwear, NO throw rugs on the floor, NO step in slippers. Hospital bed can be covered by insurance along with 1/2 a railing so Mom won't fall out or feel too caged in.
Easy slip on pants with elastic waists and deep pockets. I buy on sale on Lands End and L.L. Bean. Have everything delivered. Buy the same pants in multiple colors.
Make friends with the Church ladies who are fabulous in showing up every Sunday with Communion and a Bulletin.
Get yourself (2) calendars to log in Morning Pills & Evenings Pills, pill box and pill cutter. Wash the sheets every Monday and keep up with the laundry.
Tell PCP to bring on the troops--VNA, p/t, o/t, speech, CNA, cleaning lady, home blood draw.
My mother walked 2 miles everyday up until 48 hours prior to this "perfect storm". There were subtle signs all along but full-blown I believe due to the Pandemic where her structured active lifestyle--very social lady came to a halt.
When you go to the docs be prepared, bring a list of prescriptions and put one on your refrigerator in case you have to go out in the middle of night in the rescue. Also type on the list the PCP, pharmacy, emergency contact and if Mom wears hearing aids or on blood thinner.
My prayers are with you...I hope I have helped! Ireland
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2706263/
AND a more recent one from Mayo:
https://www.mayoclinic.org/diseases-conditions/dementia/symptoms-causes/syc-20352013
Is the hospital that is/was in a Teaching Hospital, i.e., one connected to a medical school?
Given your proximity to NYC, getting her worked up at NYU or Columbia/Weill-Cornell seems prudent.
Burke is a rehab center with outpatient clinics. They do acute rehab only, not subacute.
In your shoes, I would want to make sure that they've ruled out reaction to the new med, infections of all sorts and electrolye imbalances. And make sure they listen to what you're telling them about her previous functioning.
She was at Valley Hospital in Bergen County. We did not have a great experience. I will read the article and talk to my sister about your suggestions.
Electrolyte imbalance was definitely a concern of ours. She doesn't drink much water and apparently wasn't getting enough nutrition prior to her admission.
The LP results do show some markers they report as being associated with Alzheimers. I'm unclear about how definitive that is, or if other things which cause the same effect can cause the same lab result.
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Your mother has only been taking this drug for eight days. It may be that the dose needs adjusting, or it may be that her body needs to adjust to the medication. Don't stop it, but do report it - and make someone pay attention.
The spinal tap will test for meningitis or other acute infection, and I wouldn't trust the usual measures -- like high temperature -- to be indicative here. She's elderly, and it could no longer be a presenting symptom. Rule out acute infection and anything else as best you can. Check with an immunologist because autoimmune conditions are common enough in women and contribute to neurological symptoms.
Then consider reducing anti-seizure meds with doc's approval. But push for that if you think the new meds are part of the issue. It's my opinion that docs commonly overprescribe dosage.
You might end up coming to terms with rapid onset Alz/dementia as the most likely scenario. I can see you're considering this from your other comments. You're doing all the right things to get your mom care. Well done.
It seems that rapid onset is uncommon, so I also entertain other likely possibilities - such as - this is and has been gradual slow-progressing dementia and what looks like rapid decline is hospital delirium ... or Keppra side effects ... or something else.
Amazingly, no doctor bothered to mention to us anything about adjusting the Keppra dosage, or time for the body to adjust to it or anything of the sort.
You have taken Keppra or other seizure drugs?
>> It's my opinion that docs commonly overprescribe dosage.
Most docs overprescribe *everything*
-- I checked and she is on 500mg x 2 times/day, which appears to be the recommended starting dosage and also the minimum dosage based on some quick googling.
Over several weeks in hosp, my Mom’s personality changed drastically. I asked for a copy of her Rx list which was to follow her from her Assisted Living. I wanted to see if I could figure out if there was an error with her medications. I looked over her Rx list and all Rx products seemed correct. I couldn’t figure out why her sweet personality had completely changed (and it didn't seem like a simple mood change). After her discharge from Hosp I looked over that Rx list more closely. Someone had “dropped” the correct strength of a particular Rx. when Mom was admitted into the Hosp. She had been given 1/2 the strength of Rx for 3mos. When I realized the Rx problem & pointed it out, it then took several days to get the error corrected by all involved with her medical care, ie…Doctor, Pharmacy and ALF head Nurse/staff ( for correct strength Rx to be given to Mom). Once her Rx was corrected, we slowly saw Mom “come back” from the completely different person she had turned into when she had been given the incorrect strength Rx. It is so nice to have her back to “her real self”!
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.