Old 03-11-2018, 10:00 AM #1 (permalink)
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Default my dad is tortured with saliva/mucus - need advice...

He wakes up in the middle of the night choking on saliva and nothing helps. I mean - the only thing he tries is cough it out, and of course this doesn't help. His doctor - an anestesiologist with no experience with bulbar ALS, doesn't have any advice.

My dad suffers so much he now often says he wants to die - because of problems with saliva/mucus or whatever is stuck in there down his throat.

Can anything help?
He tried his cough assist a few times, but I think he had the impression it made things worse.

He refuses a feeding tube and still eats blended food - can this also be the cause of what's happening?
Or the fact that he is probably dehydrated because he has horrible trouble getting any fluids in...

Please help. I feel so totally hopeless (I'm far away from him).

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Old 03-11-2018, 12:38 PM #2 (permalink)
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Default Re: my dad is tortured with saliva/mucus - need advice...

There are a few medications that can help some. Brian is on Robinul. It helps to contain it but by no means does it end it. It could help. Some have luck with scopolamine patches. Just a couple of thoughts.

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Old 03-11-2018, 12:44 PM #3 (permalink)
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Default Re: my dad is tortured with saliva/mucus - need advice...

Sue: does Brian use his cough assist for these purposes, or does it make things worse?
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Old 03-11-2018, 01:03 PM #4 (permalink)
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Default Re: my dad is tortured with saliva/mucus - need advice...

The mucous and drooling are a continuous thing. Brian is trached/vented and we do use the cough assist when suctioning isn’t enough for things stuck down in the lungs.

It sounds like your dad is choking on the normal mucous we all have in our mouths, but he can’t swallow as we do naturally. Maybe I’m wrong. And it seems that they tend to produce more than normal and it continues to increase. The meds I mention help to dry those secretions so they don’t have to swallow them.

I hope that helps.
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Old 03-11-2018, 01:14 PM #5 (permalink)
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Default Re: my dad is tortured with saliva/mucus - need advice...

Some of us have used alka seltzer with good results.

In my case though the buffer in alka seltzer made stomach problems so I switched to effervescent n- acetylcysteine which works bout half as good.
Good luck
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Old 03-11-2018, 05:40 PM #6 (permalink)
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Default Re: my dad is tortured with saliva/mucus - need advice...

Does he have the use of his hands. My friend uses a wash cloth and clears her mouth out 5-6 times a minute. She also uses a suction and cough assist. She is not vented and does not have a feeding tube. It takes her hours each day to eat and eats mostly blended food to get more liquids.

Can you get the RT to come out and take a look at what's going on. Maybe more training on the cough assist might help.
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Old 03-11-2018, 06:42 PM #7 (permalink)
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Default Re: my dad is tortured with saliva/mucus - need advice...

He can move his hands, he still feeds himself – and feeding and trying to drink, and choking and coughing pretty much take all of his awake time. He’s also weak and very tired, and I think he must be super dehydrated because of how hard it is to drink. Lost tons of weight, too, probably also because he doesn’t eat enough.
I’ll recommend that wash cloth – I don’t think he tried that. But of course he complains of stuff being deep down his throat…
His medical team – doctor and nurse, know close to nothing about suction and cough assist – he is their first patient with problems of this kind.
I’m tempted to recommend that Robinul to him.
Although in general he hates trying new drugs because of how they affect him. He often has stomach ulcers and a super sensitive stomach…
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Old 03-12-2018, 06:00 AM #8 (permalink)
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Default Re: my dad is tortured with saliva/mucus - need advice...

Make sure h e is not eating m ucus producing food like dairy

Cough assist requires some getting used to, he needs to learn to use it

Try ice chips for hydration,

At night he s houlld sleep with head elevatedi

I bite down on a washcloth to soak up excess saliva. I do tjis both day and night
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Old 03-12-2018, 11:11 AM #9 (permalink)
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Default Re: my dad is tortured with saliva/mucus - need advice...

Good suggestion about dairy. It doesn't produce mucus but it does thicken it. I have no problems swallowing or breathing but when I eat a lot of dairy, it constipates me and thickens the mucus so I'm hacking it up and spitting it out more.
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Old 03-12-2018, 02:12 PM #10 (permalink)
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Default Re: my dad is tortured with saliva/mucus - need advice...

My husband just started using atropine drops under the tongue for excessive saliva. Dries it up great.
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Old 03-12-2018, 06:21 PM #11 (permalink)
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Default Re: my dad is tortured with saliva/mucus - need advice...

Does atropine require a prescription?
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Old 03-12-2018, 08:30 PM #12 (permalink)
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Default Re: my dad is tortured with saliva/mucus - need advice...

Yes it does
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Old 03-12-2018, 10:05 PM #13 (permalink)
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Default Re: my dad is tortured with saliva/mucus - need advice...

My mom would have tiny sips of hot water. As hot as she could tolerate.* Sometimes she'd add a few drops on lemon and that seemed to help sometimes.
Also, the nurse suggested a pretty unusual idea that would work at times. Instead of sitting her up when she had a saliva crisis, she suggested we lay her down, to an downward angle even. This way gravity would her her little ability to cough it out. This of course was very uncomfortable and a bit scary for my mom,* but so we're those episodes of not being able to take a breath or a break from coughing.
Her cough and suction machine were great too* even though cried at the thought of having to use it. It wiped her out, but it helped.
Hoping he finds even a moment of rest and comport.
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Old 03-13-2018, 08:37 AM #14 (permalink)
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Default Re: my dad is tortured with saliva/mucus - need advice...

Yes, I believe the atropine requires a script.
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Old 03-13-2018, 11:55 AM #15 (permalink)
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Default Re: my dad is tortured with saliva/mucus - need advice...

Chalky , do you think it would work through a feeding tube.This sounds like a stupid question , even as I'm typing it .Jim can't take any liquids by mouth.
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