Where can I find the LBD emergency room card I have read about on the forum?

Also, what are medications to avoid? Or where can I learn about this? I think I first saw Lewy in my loved one when she was taking the following after surgury in late 2009: lovenox, Ativan, morphine, zofran, darvocet, ancef. The hallucinations were horrifying, not to mention all of the other problems.

My mom is almost 71 and they first tried her on Zyprexa which initially stopped her hallucinations, but significantly increased her delusions and mania. Her neurologist took her off of it to see if it was the Zyprexa causing the mania or the LBD progressing. It was very obviously the LBD advancing. They have now put her on 125mg of Depakote to try to calm down the mania aspect.

Good luck and have LOTS of patience.

Stephanie

http://www.lbda.org/content/publications

The little wallet cards are handy but I print out the one-page 'fact sheet' to take to health care providers.

The wallet card has a very short list of meds to avoid or use for only a very short period of time.

The list by Dr. Jay Van Gerpen of meds to avoid is posted on this Forum. Can you do a search on "Van Gerpen symposium"? (The list was first presented in 2007 at a symposium in FL. I have the impression that it was originally a list of meds that those with Parkinson's should avoid.)

Those are the only two MD-authored lists I'm aware of. There may be more out there. My impression is that MDs don't like to say "never give these medications to someone with LBD." Like the wallet card, MDs seem to prefer to say "avoid if possible but use it if you have to."

I think most everyone would agree to avoid Haldol and, of course, Thorazine, which, to my knowledge, isn't even used any more.

Thanks to everyone for this great information!

I think the LBDA wallet card says to "avoid" Haldol. It doesn't say "never use" Haldol.

Dear cza,
There is another "beware list" by Dr. Daniel Kaufer, Director of the UNC Memory Disorders Program and member of the LBDA Scientific Advisory Council. He provided it to me when I asked for his advice on that part of the tips section of my book. I would include it here along with other medications I found in my research for my book, but I am away from my home computer right now and cannot give you an excerpt from it.

The Whitworth's book and the Throop's book also have discussions about what meds to avoid as well as mine, though they may differ somewhat. But some patients are going to do well with a med that might harm another one. LBD is highly variable from person to person.

I do what Pat (mockturtle) does except on the back of that page that gives a brief summary about LBD, I have my beware of these meds list for my husband. In our recent trip to the ER, it came in very handy to start discussions with those treating John. Some of them had not heard of Lewy Body Disease and others seemed unaware of drug sensitivities.

Dr. Kaufer told me that soon larger hospital ERs would have a computer program that would give this information about LBD and drug sensitivities. That should help a great deal for those with that access. He said he is one of the people working on that now, but I do not have a time frame on it.
Pat