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My PALS has increasingly AWFUL smells in his mouth. I must say this has been an issue from his early bulbar symptoms, but lately it is getting so much worse.

I'm not sure how to describe the smell, but quite rotten really.

I clean his teeth for him, he will only let me do this at night, I think I've convinced him to let me start of a morning as well. Tonight even he could smell it and thought it was something on his clothes.

He has excessive thick saliva, jaw clenching and clonus, very atrophied tongue and of course severe swallowing issues.

I'm wondering if anyone has any tips for mouth hygiene?
 
If he has a suction machine, you might try a little listerine held in his mouth for a few seconds then suction it out. That way he doesn't have to spit. Also, I think I've heard of some sort of antiseptic mouth lozenges that he could suck on if that's an option
 
Hi Tillie, I know exactly what you are talking about. With my Pal being on a vent, oral care is very important. I use suction swabs that come in a package with Perox-A-Mint Solution. He's not crazy about using them. Surprise......it's either that or the electric toothbrush. I have to also use them on his tongue which is a challenge.

Debbie
 
Tillie,
I wonder if he might have Thrush? Thrush is a yeast infection in the mouth which is fairly common in indiv with a compromised immun system. Symptoms include: creamy colored spots inside mouth (although not always), mucous membranes swollen or a little red, sometimes a burning sensation and/or feeling like you have cotton in your mouth.

There's an anti-fungal mouth drops, gel or lozenge you can get a Rx for!

Just a possibility?

Hope you find an answer!
 
I hadn't thought of thrush, thanks for suggesting it. I will get that checked but I don't see any sign of it in his mouth, but it is worth checking.

No lozenges he is bulbar onset and is nearly peg dependant except for a little runny puree.

We don't have a suction machine either.

It almost feels like the smell is coming up from inside him more than from inside his mouth if that makes sense.
 
Have him breath out through his nose and smell that breath, if it is not bad it is in his mouth, if it is it may be in his sinuses. I do not have to deal with bulbar issues, so as far as dealing with it I may not make great suggestions, but here is what I would try. A saline spray up each nostril a couple of times a day can open the sinus cavities and allow trapped mucous to move. Is there any way you can get suction equipment because that would be extremely helpful. I am able to floss my husbands teeth which seems to be where most of his mouth odour comes from, but I imagine with his jaw clenching and clonus would not be possible. If your husband can lean forward over a sink or basin you could get a water pick and flush between his teeth, letting the water run out into the basin. Mouth was could be added to the water as well. Coconut oil is a natural anti-bacterial, anti-fungal so maybe if he will tolerate it, warm it so that it is liquid and paint his mouth and gums with it. Scientist have found it so useful that they are suggesting replacing fluoride in toothpaste with coconut oil. So those are my suggestions for what it is worth. I also use a tongue brush on my husband, and that has really helped. Can you use a bite block on your husband, so that you can get his mouth open for better hygiene? The dentist use one on me as I have TMJ issues and can not keep my jaw open for dental work, I actually can relax more because I don't have to stain to keep my jaw one and don't get a stiff neck anymore.

Paulette
 
Great suggestions Paulette, thanks!

I will check his nose breathing tomorrow.

I've been using saline in his nostrils morning and night for a while now. I don't have any suction but I spray it up, then use a cotton bud to clean them out. Now very often one side in particular is always brown, like maybe small amounts of old blood. So hard for them when they can't blow their nose, he hasn't been able to do that for around 18 months.

He did have some mild sinusitis when we first started our journey to work out why is he talking funny and has trouble with cold liquids spraying back out his mouth. So it may be worth checking that.

The coconut oil is also something I think I will try.

A bite block would not work at all. He has excess thick saliva all the time, and the moment his mouth is stimulated it starts to really churn out, so he would panic as he has such a poor swallow ability.
I can get all around his mouth when I brush his teeth, it's just slow going. Have to stop and start, wait for some gagging and stuff, then start again.

I will let you all know in the next exciting episode ... :)
 
I'd talk with his doc about a suction machine. I have the same problem with the gagging and my doc immediately ordered one as I have trouble gagging after brushing and in the early am.
 
My wife agrees with the use of coconut oil. She also mentioned using oregano oil which had some antibacterial properties and sweetens the breath.
 
I've never heard of the coconut oil thing. It sounds nice. Just a thought: has he been to the dentist lately? Does he have tooth pain? He could have a cavity you can't see, creating a rotten pocket in his mouth. Also, i agree with people about the suction machine. I don't know What I'd Do without mine, since i no longer have the tongue and cheek power to spit. Good luck!
 
Don't limit your search to oral and sinus causes . There are a gazillion conditions body wide that can cause bad breath. One possibility is respiratory acidosis which causes a distinctive acetone odor similar to nail polish remover. Diabetes can cause a more fruity acetone odor. If the cause does seem to be oral, it may be possible to get a home visit from a dentist to do a basic check and if there is need for dental work, it would be an opportunity to discuss how the work could be done in the office.

Although it may seem impossible to get anything else into their mouths for cleaning, sponge "lollipops" should never be used with these patients. If the sponge gets pulled off the stick when you are trying to get it out of his mouth, he could choke on it. They can do little to clean the mouth anyway.

A jaw screw is a last resort for getting into his mouth. If not positioned correctly -- between the back molars-- it can break other teeth. It can break weak molars or catch the insider of the cheek and grind it up as you screw it in.

Instead, create thick bite block pad to put between the molars using tongue depressors and medical bandage type adhesive tape. Stack several tongue depressors together and wrap adhesive tape thickly around one end (half way up the stick) in layers. Make sure that it is securely taped down so it won't slide off. When finished, the taped end needs to be ½ to 3/4 of an inch thick. The layered tongue depressors give it strength and the adhesive tape hold them together and pads it.
To do mouth care, you will have to "sneak up" on those hyper-reflexive jaws. You have to get the bite block in place before the jaw clamps down. Try doing it when the patient is relaxed, even snoozing or yawning. Valium might be helpful. (If spasticity is severe, this will be a job that you will have to do when the opportunity strikes, and not necessarily as part of his morning bath.) Quickly put taped end of the bite block to the back and side of his mouth between his molars. Do not turn it on edge, just put it in flat. *****DO NOT put it between the front teeth! ****** The jaw clamping reflex can be strong enough to break front teeth, especially if they are weak to start with. The molars are a flatter surface, much stronger and intended to withstand grinding pressure. The tape will give some padding to the sticks to protect the teeth, and putting the bite block in flat will spread the pressure out evenly over the teeth. If he does get it between his front teeth, just let go and wait for the muscles to relax. Pulling on it will only increase the pressure and keep the jaw tight longer.
With the bite block in place, his jaws will be held far enough apart for you to maneuver the tooth brush around surprisingly well. If you can't, get a smaller tooth brush or make the next bite block thicker. Doing this while the patient is sitting up or turned at least part way on his side and/or using a suction machine while allow you to use a little more water without choking him. Be careful with the round plastic "wand" of the suction equipment however. It does not make a good bite block at all! To get the bite block out, just let go and wait for the muscles to relax. Sometimes by the time you are done with a good brushing, the muscles are already relaxing.

Diane
ALS: From Both Sides
 
Thanks so much Diane, I feel like I will need to really prep up to feel confident enough to make that block and then try it out.

I agree that the problem may not actually be from the mouth itself, as it does seem to just come out of the mouth, but it is not an acetone at all, more like a rotting smell is my best description, but not the kind of rotting smell he had at the beginning when he did have a rotten tooth and we all thought that was the cause of his speech problems - that the tooth was irritating a facial nerve and causing sinusitis. This is quiet a different smell to back then.

I feel that I need to get it checked out, so I really appreciate the range of comments to this thread as they have made me think more about this and get it prioritised.
 
Excellent advise Diane, I have used that technique in the hospital with stroke patients and it works very well. Tillie, getting it checked out is an excellent decision and takes some the responsibility off of you, as maybe the doctor will give the mouth a clean out, although I would pay to see that. Nurses are usually the ones to do that, but there may be something else causing it. One other thing that I thought of is constipation, but that usually results in fecal smelling breath. Other things are small pouches that can form along the esophagus especially if there is spasticity that collect food or mucous. Let us know how it turns out.

Paulette
 
I suspect something like the oesophageal pouches, it really seems to rise from deep inside him rather than just from inside his mouth.

He does no 2 well every day, and no it's not a faecal smell. Wish I could describe it, I can guarantee it nearly makes the eyes water when you get too close! Makes me just want to cry for him.

I'm aiming to get him to a doctor next week - Paulette doctors don't seem to want to touch anyone in their surgeries these days, so I'd pay good money to see it too lol
 
Tillie, sometimes when there is a secondary infection like a respiratory issue, a yuck smell comes up from the lungs. I always use to notice it on my kids when they were coming down with stuff.
 
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