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 Haldol alert 
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 736
Location: LA
Post Re: Haldol alert
Jeanie, it was the same way with Mr Bobby and benadryl. I had been using it off and on for several years before I knew of such a thing as Lewy Body, with great success and no ill effects. I agree, if you have used a medicine with no problems, why not continue? Now Lipitor for Mr Bobby? Forget it!!! He became a wild man. But doesn't everyone take Lipitor? Not Mr Bobby.

Trust yourself.

DrP


Wed Feb 02, 2011 1:21 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Haldol alert
Wow, Dorthea, I'd never heard of the Lipitor/wild man connection. Did Mr B take it before he developed dementia, or was it new after that condition appeared? You are right ... "everyone" takes Lipitor (or did before insurance companies insisted we take a cheaper statin). Did you find something else that worked without that side effect, or did you just give it up?

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Wed Feb 02, 2011 1:29 am
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 736
Location: LA
Post Re: Haldol alert
Mr Bobby was well into the Lewy Body condition [his doctors never did diagnosis it as such, they just treated the symtoms] and Mr Bobby really did not need the medicine because his cholestrol was never high but he did have a small stroke and others in his family who were treated by the same doctor all had major cholestrol problems so our dear family physician was just trying to do anything to help his old friend's brain. I faithfuly administered it for three months and was considering placement because I could no longer handle him but I began to review when the behavior had started. Doctor W. agreed that I could ease him off it. When I did, he was like a new man. Still had Lewy Body but he no longer did the horrible things that we had been living with.

they are all different.

DrP


Wed Feb 02, 2011 2:16 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Haldol alert
DrP,
You are one smart cookie -- conducting your own medication trials.
Robin


Wed Feb 02, 2011 12:27 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 736
Location: LA
Post Re: Haldol alert
Aw, Robin, I miss him so much. DrP


Wed Feb 02, 2011 4:14 pm
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Joined: Fri Jun 05, 2009 4:15 pm
Posts: 82
Location: Onsted MI
Post Re: Haldol alert
Thank you for your support of Haldol as I have read on this forum not to use it so I was trying to get away from it. I have a lot of Haldol left and agree that I should use what works for my honey. If it Dr. says don't use Haldol under any circumstance....what then?


Wed Feb 02, 2011 9:44 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Haldol alert
Does your doctor know that you've used it in the past with no problem?

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Wed Feb 02, 2011 9:51 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Haldol alert
Ask your physician if your Lo's personal experience with the medication should outweigh any community advice/alert/rule.


Wed Feb 02, 2011 11:00 pm
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Joined: Fri Jun 05, 2009 4:15 pm
Posts: 82
Location: Onsted MI
Post Re: Haldol alert
The hospice nurse is the one who is talking to the Dr. and I do believe he told him that I had been using it with no adverse reactions. He has a call in today to the Dr. and will call me tomorrow after he talks to him. I read somewhere that 90 % of LBD patients have a bad reaction..... maybe my LO is in the 10% aye? (I usta live in Canada and my husband is a Canadian) Thank you for answering.


Wed Feb 02, 2011 11:39 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Haldol alert
Jeanie, if 90% of LBD patients have bad reactions to Haldol, and if your husband has LBD, then since your husband does not have a bad reaction (which we know from you observation), then, yup, I'd say that he is in the 10% minority. (Somebody has to fill in that portion of the pie chart.) 8)

Keep in mind that the accuracy rate for LBD diagnosis (as confirmed by autopsy) is less than 50%. :!: So how meaningful that 90% figure is depends on whether it is based on confirmed cases or just diagnosed cases. And how much that applies to your husband depends on whether his probable LBD diagnosis is accurate. And even if the % is accurate and LO does have LBD, there is still that 10% ...

:cry: This really is very, very complicated, isn't it? Use your best judgement, and don't beat yourself up over your decision. There might be a "right" answer out there somewhere, but I don't see how mere mortals can be expected to know it.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Thu Feb 03, 2011 12:00 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Haldol alert
The correct percentage is "50%." A suggestive feature of LBD is:

"Severe sensitivity to neuroleptics occurs in up to 50% of LBD patients who take them."

Probably Haldol is a special case where it's on list after list of meds to be avoided if you have parkinsonism or LBD.


Thu Feb 03, 2011 1:15 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Haldol alert
And...just a reminder that confirmation of the LBD diagnosis is not possible until post-mortem brain autopsy. More often than not the clinical diagnosis of LBD doesn't hold through the autopsy.

Hopefully you've made arrangements for brain donation for your LO!


Thu Feb 03, 2011 1:20 am
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Joined: Fri Jun 05, 2009 4:15 pm
Posts: 82
Location: Onsted MI
Post Re: Haldol alert
Well, now the Dr. has prescribed Xanax for Wayne. Has anyone used this with Sinement and had good luck? I want the Haldol back but better be safe than sorry. The Ativan was awful.

Also, I am interested in the brain research. We have made funeral arrangements already so don't know how that would fit in.


Mon Feb 07, 2011 6:19 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Xanax
When Seroquel was deemed less effective recently, Dale's neurologist gave him Xanax to calm his behavior. Dale takes very little Sinemet now.
It seems to me that the Xanax is a 'big gun' and so far, I'm reluctant to use it regularly. I will reserve it for out of control episodes.

_________________
Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Feb 07, 2011 6:27 pm
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: Haldol alert
Would this work?

Before taking LO to a hospital or anywhere Haldol might be given, take a permanent marker or one of those pens surgeons mark on you and write "Allergic to Haldol" in big letters on each arm. Wouldn't wash off real quick and could be refreshed as necessary. I don't think markers are toxic.


Mon Feb 07, 2011 6:42 pm
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