Jennifer:
So sorry you're experiencing this; you may want to touch base with the lawyer that drafted your DPA-Healthcare. Ours is explicit in that it specifically authorizes us to approve or decline any medical care for Cal, including medication. We do not have a guardianship, and wouldn't want one when this structure is working well for us.
Navane is related to Taractan and Fluanxol, all of which are incredibly old as antipsychotics go - I think Navane has been marketed for about 45 years. As you've discerned, it's a neuroleptic antipsychotic and is probably not appropriate in people with LBD.
Navane is specifically found on the list of "Medications LBD Patients Should Never Take", from the recent symposium held in South Florida. The list was composed by Dr. Jay Van Gerpen, director of the Movement Disorder Clinic, part of the Ochsner Clinic in New Orleans.
The logic behind this list is that every drug on it has, among other things, profound anticholinergic effects. There seems to be wide scientific consensus that people with LBD should avoid drugs with anticholinergic effects at all costs. I cannot find the citation I am looking for at the moment, which discusses other irrational drug choices for people with LBD, but it includes anticholinergic antihistamines such as Benadryl, drugs for overactive bladder, and several others.
I don't know if your mom is being treated by a neurologist with a special interest in LBD, but consider referring to the article at
http://www.lewybodydementia.org/AR0504BFB.php - Dr. Boeve is a respected neurologist at a leading institution, and we found, prior to even thinking Cal's problem was LBD, that we had coincidentally adopted his management suggestions and dramatically improved Cal's daily life. He makes specific drug treatment suggestions for each common category of symptoms, explaining the rationale for each, at
http://www.lewybodydementia.org/Boevelink.php ,
starting around page 14. I would highly recommend sharing this document with the clinicians involved in your mom's care.
We were at the same place with Cal in late September of this year; suicidal ideation, poor sleep, impaired cognition, paranoia, the whole nine yards. Adjusting antidepressants didn't do diddly. Getting the right combo of acetylcholinesterase drugs, psychostimulants, atypical and antidepressant, along with a couple minor tweaks in the rest of the mix has turned things around.
The beauty of psychopharmacology is that there's usually another drug out there, in a same or different class, to treat a particular symptom. It's just tricky finding the right one.
Your mileage may vary, but our psychiatrist is quite fond, in the aged, of using two amino acids for depression with sleep problems. You might remember l-tryptophan, which was banned as a supplement due to a contamination problem in the early 90s. l-tryptophan metabolizes in the body to 5-HTP, which is then metabolized to serotonin. She suggests 50 mg of 5-HTP at bedtime, along with 250 mg of l-tyrosine. Tyrosine is a precursor to dopamine, norepinepherine and epinepherine, a group of molecules known as catecholamines that are also important neurotransmitters. The combo seems well-tolerated and safe, and might be worth discussing with your prescriber as well.
Much patience is required - I totally understand how incredibly frustrating this can be.
Eric
