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 "Dealing with Drooling" (Neurology Now article) 
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Post "Dealing with Drooling" (Neurology Now article)
There's a good article in the latest issue of Neurology Now magazine on the treatment of drooling in neurological disorders. Dr. Robert Miller (a neurologist at Stanford and at the ALS center at CPMC San Francisco) is quoted in the article as saying: "We tend to think that since some of these [neurologic] conditions are incurable, they're also untreatable. That's a big mistake. We have many treatments—for the breathing issues, the nutritional issues, treatments that slow the progression of disease, and yes, treatments for drooling."

The article mentions the medication glycopyrrolate (brand name=Robinul). Generally speaking, caution should be exercised when giving an anticholinergic medication such as Robinul to someone to dementia (as there may already be a lack of acetylcholine in the brain of someone with dementia).

Neurology Now is a magazine written for laypeople. Subscriptions to the bimonthly publication are available at no charge; see:
http://journals.lww.com/neurologynow/Pa ... vices.aspx

Robin


http://journals.lww.com/neurologynow/Fu ... id.15.aspx

EYE ON THERAPY
Dealing with Drooling
Getting rid of excess saliva goes high-tech.
by Amy Paturel, MS, MPH

Neurology Now
February/March 2011; Volume 7(1); Pp 38,40

When 61-year-old Deborah Clark first experienced trouble swallowing, she didn't think much of it. But six months later, when she began having symptoms like slurred speech and difficulty projecting her voice, she visited a neurologist. Diagnosed with amyotrophic lateral sclerosis (ALS, also called Lou Gehrig's disease) in February 2008, Clark quickly discovered how integral the muscles in her mouth were to her quality of life. Not only did she have difficulty speaking, but she also experienced excess saliva pooling in her mouth. At its worst, Clark found herself changing clothes up to four times a day because she had drooled down the front of her shirt.

“I was reluctant to be in public or around strangers—especially when a meal was involved,” says Clark. “People were always offering me tissues to control the drooling. It was embarrassing.”

Drooling, or sialorrhea, can be a major problem for people with neurologic conditions ranging from Parkinson's disease and cerebral palsy to certain types of stroke and ALS. People with these conditions may not have the brain control to coordinate muscle movements in the face and mouth.

“Any condition that affects the muscles and nerves of the bulbar area (the swallowing mechanism) could cause increased drooling,” says Steven Bachrach, M.D., co-director of the Cerebral Palsy Program for Alfred I. duPont Hospital for Children in Wilmington, DE. And if you're not swallowing your saliva, it tends to pool and accumulate in the mouth, and then it starts overflowing.

Beyond the obvious social implications of incessant drooling, the overflow of saliva in the mouth can irritate tissues around the lips and even cause aspiration pneumonia, a serious condition where people breathe fluid (or other foreign materials) from the mouth into the lungs. But with recent advances in everything from oral medication to botulinum toxin injections, people have more options than ever to control sialorrhea.

SWALLOWING THERAPY
Speech and swallowing therapy is a great option for people who are mildly impaired and highly motivated to control their drooling. Most neurologists will advise patients to investigate this approach before considering invasive procedures. Through a series of sessions, therapists teach patients a variety of techniques to improve the safety of swallowing and minimize the risks of aspiration.

“There's a lot that a swallowing therapist can do in this area,” says Robert Miller, M.D., professor of neurology at Stanford University and director of the Forbes Norris ALS Research Center at the California Pacific Medical Center in San Francisco. “If you tuck in your chin when you're swallowing, for example, you'll open up the airway, making it easier for fluid and food to go down.”

Even just becoming more aware of when and how you swallow can be effective. With regular training, people can learn to swallow more efficiently and get rid of excess saliva. Unfortunately, none of these techniques actually dries up the spit. If that's your goal, medications or surgery are your best bets.

MEDICATION
When less invasive methods have failed, the next approach is medication, usually anti-cholinergic medications. This class of drugs is used for everything from seasickness to overactive bladder. But with dry mouth as one of the main side effects, anti-cholinergics have become a useful tool to control drooling. In fact, studies investigating glycopyrrolate (the most commonly prescribed medication for drooling) consistently find the drug reduces drooling for up to 95 percent of patients who try it.

“One of the biggest challenges was that glycopyrrolate was only available in tablet form, so it was hard to adjust the dose to very small amounts,” says Dr. Bachrach. But in January 2011, the Food and Drug Administration approved a liquid form of the drug, which will make it easier to take and easier to dose.

When Clark started taking glycopyrrolate, her drooling improved within a matter of days. Initially she took one tablet three times a day, but eventually she needed four tablets daily to experience the same effects. Over time, even four tablets didn't reduce her drooling to an acceptable level.

“Even if the drugs do work initially, receptors on the cells and within the salivary glands change, so patients may end up requiring higher and higher doses to get the same result—and then they get side effects,” says Scott Brietzke, M.D., M.P.H., director of pediatric otolaryngology at the Walter Reed Army Medical Center in Washington D.C. While dry mouth is the most common side effect, some people also experience constipation, urinary retention, and cognitive side effects such as confusion and memory impairment.

If the anti-cholinergics stop working—or the side effects are intolerable—some physicians prescribe amitriptyline, an anti-depressant that dries up saliva. A bonus: amitriptyline improves sleep, which is often disrupted in patients with ALS, multiple sclerosis, and other neurologic disorders.

INJECTIONS
If meds can't control drooling, botulinum toxin is another option. Using an ultrasound-guided approach, the physician injects the drug into the major salivary glands to paralyze the muscles that normally squeeze out saliva. In one study of 131 patients, published in the medical journal Archives of Otolaryngology Head and Neck Surgery in 2010, botulinum toxin injections in the submandibular glands (the two glands located in the lower jaw that produce most of the saliva) reduced drooling and improved quality of life among patients who received injections. Two months after the injections, nearly 50 percent of patients experienced significant improvement, with effects beginning to taper off at the eight-month mark.

Clark started with just two shots into the salivary glands on either side of her face. Within a week, her drooling had dissipated more than it had with glycopyrrolate alone, and the effects lasted for three months. On the heels of this success, Clark's physician gradually increased her dose to a total of six shots (three on each side).

“With six shots, the results were much more dramatic,” says Clark. “I have very little drooling and the only side effect is dry mouth, which is easier to deal with than drooling.” After the last round of botulinum toxin, Clark discontinued the glycopyrrolate without any noticeable difference.

Studies suggest that combined injections in both the parotid glands (which are located in the cheeks) and submandibular glands are slightly more effective than injections into the submandibular glands alone. And after repeated injections, there have been some reports that the salivary glands actually stop working, resulting in a permanent reduction in drooling. “You can't count on that,” says Dr. Bachrach, “but it does happen in some patients.”

For other people, though, botulinum toxin is just a trial procedure to determine whether surgery will be effective. “Botulinum toxin deactivates those major glands, so we can see if that helps the patient with either the social problem or aspiration,” says Dr. Brietzke. “If there's significant improvement, then we can consider a potentially irreversible procedure, such as tying off the ducts or removing the glands.”

SURGERY
Surgical treatment for drooling may be even more effective than injections, without subjecting people to recurrent treatments. Studies show that people who have surgery are generally happy with the results. Unfortunately, there are a variety of approaches and little consensus about which ones work best. The most straightforward procedure involves the submandibular glands: Rerouting the ducts from these glands to the back of the mouth makes it easier to swallow saliva. Alternatively, surgeons can reroute the ducts from the parotid glands or remove the submandibular glands altogether.

“The evidence we have suggests that intra-oral procedures (like tying off the four ducts in the mouth) may not be as successful,” says Dr. Brietzke. According to a study he co-authored in Archives of Otolaryngology Head and Neck Surgery in 2009, removal of the submandibular glands and parotid duct rerouting appear to have the highest success rates at 87.8 percent while the success rates for tying off the four ducts varied wildly from 31 to 100 percent.

“The biggest downside is that surgery is not reversible,” says Dr. Bachrach. “Once you've tied off the ducts, or removed the glands altogether, you can't undo that.” So while you can go from drooling to dry, you can't go back. And dry mouth has its own set of complications.

Even so, treating symptoms like drooling still gets short shrift from some health care providers.

“We tend to think that since some of these [neurologic] conditions are incurable, they're also untreatable,” says Dr. Miller. “That's a big mistake. We have many treatments—for the breathing issues, the nutritional issues, treatments that slow the progression of disease, and yes, treatments for drooling.”

For Clark, that treatment has been invaluable. Today, she no longer carries a napkin with her at all times, she doesn't shy away from social events, even with strangers, and her shirt stays dry throughout the day. “I'm very happy with the results,” she says.


Mon Feb 21, 2011 2:35 pm
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Post Re: "Dealing with Drooling" (Neurology Now article)
Robin, I get Norology Now and read the article immediately. Frank has tried the Transderm-scop patch, Sal-Tropine and botox. The patch caused increased confusion, Sal-Tropine only helped with the drool for 4 days, but didn't change his cognition or increase confusion, and no sign of decrease in drool with the boxtox???????? Would you suggest anything else that is mentioned, I'd say surgery is out. Drooling is still my biggest complaint.

Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Mon Feb 21, 2011 3:16 pm
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Post Re: "Dealing with Drooling" (Neurology Now article)
I thought of you immediately when I read this article, noting that you had tried everything and thinking that surgery sounded extreme. There was an August 2007 review article written on treating drooling in PD and parkinsonian disorders (such as DLB). The only other thing it mentioned was radiation treatment:

Radiation therapy is an option for treatment. "It has been associated with adverse events such as xerostomia...and late malignancy in the irradiated field, which may occur 10-15 years post-treatment. However, radiation therapy may be a reasonable option in elderly patients who are not candidates for surgery and cannot tolerate pharmacological therapy."

xerostomia = dry mouth

The article concludes that botox is the best treatment for drooling in PD. I don't know if I posted the abstract here. (Sue Lewis may've posted my email with excerpts to the caringspouses Yahoo!Group.) The PubMed ID# is 17620887.


Mon Feb 21, 2011 5:36 pm
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Post Re: "Dealing with Drooling" (Neurology Now article)
Thank you Robin, Frank has a Dr. appointment next Monday, last Nov. when I told him the the Sal-tropine was very temp. he said he'd continue to look for options, I'll ask what he thinks about radiation.

Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Mon Feb 21, 2011 7:00 pm
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Post Re: "Dealing with Drooling" (Neurology Now article)
We saw Frank's pyschiatrist today and took in the article on drooling. He had never heard about radiation for drooling but said he'd check into it, also questioned that the insurance co or radiation dept would be willing to go along with it.

He thought the disease has progressed beyond where Namenda and Aripect is helping. We'll discontinue nanemda during the next two weeks and after our visit in April, he'll most likely discontinue aricept too. Then the only meds Frank would be on is Zyprexa and Gabapentin at bed time.
Frank is such a handsome package and still very mobile, but he can no longer relate mentally, most of the time. BUT THEN, LIFE GOES ON!!!!

This message is out there in syber space, somewhere :mrgreen:

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Mon Feb 28, 2011 4:43 pm
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Post Re: "Dealing with Drooling" (Neurology Now article)
Wow, Gerry! It's the first time I've heard of any doctor taking someone off dementia meds because they didn't seem to be working any more!! There is hope yet! :P

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Feb 28, 2011 7:35 pm
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Post Re: "Dealing with Drooling" (Neurology Now article)
Gerry,
Glad you had the article with you as I doubt many would've heard of radiation! I hope the medical professionals and insurance people can figure out how to make it work.
Robin


Tue Mar 01, 2011 3:19 pm
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Post Re: "Dealing with Drooling" (Neurology Now article)
mockturtle wrote:
Wow, Gerry! It's the first time I've heard of any doctor taking someone off dementia meds because they didn't seem to be working any more!! There is hope yet! :P


My request for Klonopin for Dale from the neurologist was met with the suggestion that we start him on the Exelon patch..... I said, "NOW?" What do we want? Clarity for his fantasies from the bed?

(I'm not kidding.....)

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


Tue Mar 01, 2011 4:13 pm
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Post Re: "Dealing with Drooling" (Neurology Now article)
I find the lack of knowledge of LBD (maybe dementias in general) by neurologists to be just plain scary! If a neurologist has an LBD patient but isn't very well informed about the disease, wouldn't you think that s/he would either get informed or refer the patient to someone else who already is?

When my mother was diagnosed a year ago after a thorough workup at a major teaching hospital, I thought her attending neurologist sounded very knowledgeable--only because I knew nothing! Now, after all the reading I have done, I realize that he was just plain wrong about a lot of things. In fact, I wonder if she had LBD at all, or whether it's a combination of LBD and something else, or just something else entirely (as in another kind of dementia--I have no doubt that she has dementia).

How are these neurologists supposed to help our LOs when we have to be feeding them LBD literature and straightening them out about the meds? You must be even more frustrated than I am, Leone.

Julianne


Tue Mar 01, 2011 4:22 pm
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Post Re: "Dealing with Drooling" (Neurology Now article)
My guess is that most neurologists are like Frank's psychiatrist -- have never heard of radiation treatment for drooling. I wouldn't expect them to know about all sorts of off-the-beaten-path treatments for symptoms but would expect them to know about dealing with dementia.


Tue Mar 01, 2011 4:31 pm
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Post Re: "Dealing with Drooling" (Neurology Now article)
You are absolutely right, Julianne. I am furious. Furthermore, I cancelled all other appointments with him and we won't be going back.

At first, I too had the impression that he was knowledgeable .... mostly because I was not. He put Dale on the typical Sinemet with Seroquel at night and Dale was fine from August of 09 to November 10. We tried a number of additional meds but they always made Dale sick to his stomach or groggy and he didn't like that.

When Dale quite suddenly became more delusional than before, I blamed the Sinemet merely because he wasn't taking anything else. Now I suspect that he was just taking a downward turn... and that nothing could have prevented it. The disease was running its course.... and when that happens, you have limited choices.

Each of these cases is so different. Dale does not have drooling issues at all. He does have a post-nasal drip, however. So he coughs on occasion. We prop his bed up for sleep so the problem is minimized.

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


Tue Mar 01, 2011 4:35 pm
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Post Re: "Dealing with Drooling" (Neurology Now article)
I agree, Robin, that a neurologist should not be expected to know of every cutting edge or off the beaten path treatment.

But I do expect that a neurologist who holds him/herself out to be competent to treat dementia should be able to diagnose and distinguish among the different forms of dementia and, if not specialized enough to treat a particular one, then s/he should be capable of referring, and willing to refer, the patient on to someone who is.

Given that LBD is, what, the second most common form of dementia, it seems to me that any competent neurologist treating dementia ought to be pretty darn well versed in it by now.

And don't get me started on my rant about doctors just throwing medications at everything without thorough investigation and consideration of side effects, contraindications and drug interactions, not to mention some patient education.

Just my two cents.

Julianne


Tue Mar 01, 2011 4:51 pm
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Post Re: "Dealing with Drooling" (Neurology Now article)
This thread is about drooling. I think it's wonderful that Frank's psychiatrist has an open mind about radiation as a treatment and is willing to look into it.


Tue Mar 01, 2011 5:33 pm
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Post Re: "Dealing with Drooling" (Neurology Now article)
Good point, Robin, we are getting off the track. Sorry about that.

Julianne


Tue Mar 01, 2011 6:22 pm
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