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DeborahS

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CALS
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Northampton
My husband, who has ALS, has recently been having trouble with thickened mucus in his mouth and nose. It usually starts in the afternoon or evening and he spends many hours having to spit and blow his nose. At this point, he gets his nutrition from a feeding tube, but was eating a little until this problem started. Now he says eating is unappealing because the food mixes with the mucus into an unpleasant mass. We have tried changing his GRD medication, which didn't help.

After searching the forum, I've read that other people have this problem, and there were a few suggestions: specifically papaya juice or meat tenderizer. But those who offered these suggestions said that they didn't know if they actually worked.

Has anyone had success dealing with this? Does anyone know what its cause is?
 
Hi Deborah. Welcome but sorry you have to be here. Is there any chance you could get a liquid decongestant or crush one up and put it down the feeding tube? Some of the people here have had susccess with Coca Cola helping with secretions but they were able to still drink it. Hope this helps.

AL.
 
Hi, Deborah,
I have that problem, and have not really solved it, but I have a little routine that makes me feel better and makes my mouth feel cleaner.

With me, the saliva is triggered by trying to swallow pills and/or drink smoothies and milk shakes or eat soft foods. The only solid food I eat now is small bites of whole wheat toast with the crusts cut off, slathered with margerine, for breakfast and before bed. For some reason, this doesn't trigger a saliva flow.

To clean my mouth after eating, and to stop the saliva, (this is disgusting) I hang my head over the sink and take big mouthfuls of hot salt water and spit it out. I keep doing this as forcefully as I can as long as I can ... gulp after gulp. It takes a long time and a lot of water before I feel that I am spitting out more water than saliva! When my mouth finally feels clean, I fold up a paper towel and bite down on it to absorb any excess saliva that's still flowing. It might take 2 or 3 towels and several minutes with each, but the paper towel texture seems to cut off the "trigger" and the saliva flow actually calms down to normal.

This problem is worst for me in late afternoon/evening, because that is when I take pills and drink a milkshake.

I have no problem with the saliva when I'm not eating or drinking or talking because my mouth droops open and mouth breathing keeps my mouth dry.

I don't know what causes it, but it is getting worse with me, despite my wearing a scop patch. I'm going to ask my neuro to give me something additional, as this is (as your husband knows) a Kolossal Pain.

I hope your husband finds a solution. If he does, please share it with us.

Take care,
BethU
 
my mum has the same problem, and ive read about the coke thing and might give it a try although she hates fizzy drinks, so far she hates everything that seems to help! I was wondering her phelgm is becoming a bigger problem than i first noticed, it seems to be really thick and also discoloured, what does this mean? Does anybody know?
 
Hello Everyone,
Matt has the same thing. He has had this every since he started losing his voice. He has tryed everything and nothing works for him. He stays in the bathroom for about two hrs. every morning and off and on all day. I hope when we go to the ALS clinc for the frist time on Tues.of next week they can help him with that. If we find out anything I will let you all know. Keep up the Faith everyone. I am praying for you all. God Bless Us All! Hugs Debbie
 
I was wondering her phelgm is becoming a bigger problem than i first noticed, it seems to be really thick and also discoloured, what does this mean? Does anybody know?

Sorry, I don't know why it is happening, but mine is thickening, too. I'll ask at the clinic next week. It is really difficult to deal with. Your mom has my sympathy.

And Matt, too!
BethU
 
Hi ... I just found this on the website of the Baylor College of Medicine, Bobby R. Alford Dept. of Otolaryngology-Head and Neck Surgery.

"Three factors that contribute to the development of thickened saliva are mouth breathing, pooling of saliva in the oral cavity and dehydration.

"Thickened secretions are treated by a combination of fluid and drug management. Drug management includes quaifenisen and potassium iodide which increase salivary flow and thus thin the secretions. A third medication is papase, which is found in the supermarket in the form of meat tenderizer. Papase can be applied to the mouth with a cotton swab and will dissolve thickened secretions and allow for easier transport."



The mouth breathing certainly applies to me. Possibly dehydration does too, as I don't drink many fluids except for fruit smoothies and milk shakes. Pooling of saliva is because we bulbar types don't swallow as much.

This sounds like there is something we can do about it! I'm going to try sipping more liquids ... and getting some meat tenderizer! And tying to figure out how to keep my mouth shut.

BethU

PLEASE NOTE: there is a disclaimer on the website that reads:
The information contained within the Grand Rounds Archive is intended for use by doctors and other health care professionals. These documents were prepared by resident physicians for presentation and discussion at a conference held at Baylor College of Medicine in Houston, Texas. No guarantees are made with respect to accuracy or timeliness of this material. This material should not be used as a basis for treatment decisions, and is not a substitute for professional consultation and/or peer-reviewed medical literature.

Otolaryngology Aspects of Amyotrophic Lateral Sclerosis
Troy Callender, M.D.
April 23, 1992
 
Well my mam drinks water all day long so certainly dehydration is not the problem, im trying get her to drink coca cola as this apparently helps with the phelgm so ill let you know if it works, I must ask at the clinic about the discolouring of it? Will let you know what the outcome is
 
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