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would the peg help with saliva/mucus problems?

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NotMyDad

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Hi All,

My bulbar onset dad who refuses a peg has more and more problems with not being able to cough out whatever bothers him in his throat, or deeper than throat, and also with saliva or mucus - I am not sure he knows which one is the bigger problem; he seems to think it's saliva, and its worst in the evening/night, comes out through his nose sometimes, cough assist doesn't help much, he can't sleep because something bothers him in there somewhere and makes it very difficult to breathe - he seems to be choking (he has no breathing problems otherwise) ... the way he describes it is not entirely clear to me, so am not sure how much sense my description makes sense in here...

He thinks that the saliva gets worse depending on the consistency of the food he eats - that maybe when the puree is a bit too think, the saliva will get worse. That it gets thicker, and that's why he can't cough it out/get it out with cought assist..

(He also doesn't believe in anything that his doctor tells him; but the doctor, anesthesiologist, never even had a bulbar onset patient so his knowledge is limited.)

Is it possible that the consistency of the food affects the production/thickness of the saliva? (I don't think so, but I promised him I will ask here.)

And another question: would eating with PEG help those problems somewhat, or is it something that every bulbar onset patient struggles with no matter what, and it only gets worse as the disease progresses?

Thank you for your help...
 

Wilson2009

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Remembering that everyone's journey with ALS is unique, the best thing I have done since I was diagnosed was to have a feeding tube placed. My weight loss stopped. I was no longer in fear of choking or, worse, aspirating. My wife was no longer scared to death every time I eat. For nothing more than peace of mind and reduction of stress, the feeding tube was worth it.

In my experience, the choking does get worse as time progresses. When I first had the tube placed, I could handle ice cream, soup, pieces of a Hersey bar (no nuts), and other items that would melt in my mouth. Now I am down to yogurt and pure liquids, but even those are causing some issues. My saliva and mucus are becoming more of a problem, though I say that with a grain of salt as I just got over a cold that caused heavy mucus.

Can I ask if your Dad is using anything to control the saliva, like atropine or amitriptyline or scopolamine?
 

JimInVA

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My PALS, Darcey, is beginning to have more frequent issues with aspirating saliva and having to move mucus from her lungs. To this point, we've been proactive with the CoughAssist and have found it to work for her needs. She noted early on that milk based items (ice cream, cheese, milk, etc.) seemed to cause mucus to deposit in her lungs. She does one of two things to negate that effect - (1) avoid the milk related item or (2) minimize the amount ingested and take a mucus relief pill in advance or immediately after. Darcey has begun to wonder if there will become a point-in-time when the CoughAssist won't be as helpful. Time will tell.

Good luck with finding a solution that works for your Dad.

My best...

Jim
 

Narrowminded

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Brian was not bulbular onset, however for him the mucous just continues to increase over time. In your dads case, it could be that he is aspirating the food and what he feels in there is food, or mucous.

Brian was also stubborn about it, and he already had a tube in place. He ended up having scrambled eggs removed from his lungs via a bronchoscope. That’s when he finally agree to quit eating by mouth.

I wish you much luck with your dad.

Hugs, sue
 

NotMyDad

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Thank you so much for your replies!
My dad doesn't use any meds for saliva or mucus, and doesn't want to try any after his experience with Neudexta that made him very, very sick for days (he was so nauseous from it he pretty much stopped eating for a few days.

When the PALS gets food only through the PEG - do the problems with saliva and mucus stay the same, or would the decrease? I'd assume there would be no change as concerns mucus, but perhaps it'd get a bit better with saliva? Is saliva/mucus production still affected, then, by what food goes in through the tube?

I know I am not supposed to push any remedies into him, but I end up mentioning the PEG from time to time - especially after I get emails about new terrifying choking episodes...
 

GregK

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My opinion on the feeding tube:

Be aware that you have the right to refuse food at any time if you so choose. However, the G Tube is still invaluable for hydration and medicine.

IN MY OPINION getting a G Tube is a no-brainier, and forcing your caregiver (cALS) to watch you choke on water and medicine, and possibly die from pneumonia is terribly selfish. But, again, it is your choice.​
 

Ceelea

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Echoing GregK. - the tube for meds and liquids, if not nutrition is such a game changer. The Clinic staff pushed hard on this issue, as they have not done for any other. My PALS has had some difficulty, which we are going through now, but she would stand by the choice to get the tube.
 

Firefighter58

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I am bulbular onset and have none of the problems you speak of. I agree with Greg about the tube I have one and have never regretted getting it. I still eat what ever I want by mouth though, and take all meds and vitamins by tube.
Al
 
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affected

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To answer your actual question - saliva and mucus problems may well continue to a large degree with a feeding tube however there will be a noticeable difference because he will not be trying to swallow food as well. He may cope better with just saliva and mucus if he is not eating, and the act of eating may be stimulating more saliva, and food such as dairy may be stimulating more mucus.

An aspiration pneumonia is unlikely if he is no longer eating by mouth because it is the bacteria in food particles that sets up an infection in the lungs after aspiration. A large amount of aspirated mucous may set up an infection, nothing in this disease is quite guaranteed ever of course.

He may produce less mucus if strategies are introduced, but he is not really cooperating with looking at any strategies.

Is there any FTD involved do you think, or is this purely a fear reaction possibly?

If he is not going to use any strategies like peg, meds, cough assist etc, will he accept help from hospice and possibly anti-anxiety meds to help as things get worse?

I'm so sorry, it's a very hard situation!
 

Narrowminded

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For Brian on the vent, the switch from eating by mouth to eating via tube created no change in his saliva or mucous.

Hugs,

Sue
 

pittsburghgal

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My husband takes all food and water through the PEG tube but still has a lot of mucous and saliva which is increasing at this point.

Sharon
 

NotMyDad

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Thannk you all! I so much appreciate your input...
I have the feeling that my dad will still say no to the PEG, and to all other possible suggestions...
If I could promise him that the PEG will help with saliva/mucus problems - then maybe he'd consider, but it clearly wouldn't....

It seems that he accepted the choking episodes....

I sometimes wish that pneumonia takes him soon....
Because what else can be done? He doesn't want any advice ....
 

affected

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I know it's really hard, but it is his journey, his disease and his body, so at the end of the day, his choice. Maybe he won't make the best choices, but since no choice can possibly result in a cure, our job as CALS and family is to love him and support his wishes.

Whilst I advocate for feeding tubes, I also advocate most strongly for PALS choices. I however agree and hope that if he is aspirating and miserable, then it is imperative he understands pneumonia and makes his choices on this clear - if a pneumonia results does he want it left untreated and just be given palliative care?

I know my Chris was in pneumonia in his last days, but with careful palliative care at home with me, he was without fear or pain.
 

Herdaughter

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My mom doesn’t want a feeding tube either and she’s dropping weight quickly. I feel for you NotMyDad. I promised my mom I would always respect her wishes so now I have to do just that. Maybe she will be talked into it by her doctor. That is really the only hope I have on that. Please let me know how it goes with your dad. I think we are very likely in a similar situation in regard to what actions our PALS are willing to take to prolong life. My heart goes out to you.
Megan
 

tripete

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My opinion on the feeding tube:

IN MY OPINION getting a G Tube is a no-brainier, and forcing your caregiver (cALS) to watch you choke on water and medicine, and possibly die from pneumonia is terribly selfish. But, again, it is your choice.​
I could not DISAGREE more. To call people selfish for trying to cope with this suckfest the best way they can is just wrong. My wife and i have discussed the PEG and she and I understand that the choking etc will continue. But we both want to face it straight on. I do not take meds either because again it is a choice that we have made to deal with everything together in our own way. We REFUSE to let ALS decide our actions.

I understand and respect your opinion about the G Tube but disagree with your "terribly selfish" description.

I choke everyday and while it hurts both of us it is our choice as to how we want to live our lives - and it has nothing to do with selfishness.
 
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