Abnormal sensations in the gums and around the mouth

[Ameeta]

Hi Everyone,
I am new to this forum. My mom was diagnosed with bulbar onset Motor neuron disease in April 2021. Her symptoms started with speech and swallowing issues.
At present she has a PEG tube and uses writing for communication. Though she has grown quite frail and her activities are very limited, she tries to remain cheerful. She complains of some abnormal sensations or drying in the mouth and gums and is very very disturbed by it. She tries to wipe her mouth and gums many times with a towel. She is not able to tell us exactly what she feels. Apparently, there is no local problem with the teeth and gums according to the dentist. We are not able to comprehend what is troubling her so much. Have tried artificial saliva, mouth gels, ice, etc but they are not of much help. Has anyone else in this forum experienced something like this? Would be very helpful to learn from all of you....thanks....

 

[lgelb]

I'm sorry to hear about your mom.

Have you tried rubbing grapeseed oil as a coating? When she dries her mouth, is there actual saliva or mucus or does she come up dry? Is she hydrated enough that her skin does not dent when you push it in?

 

[Lhberko29]

I bulbar onset ALS my gums are very swollen not sore. I keep biting my lips. I put listerne in water in run through waterpik. I have a tongue scraper. I can’t swallow anymore and nonverbal. I am Gtube and take children Advil liquid 20 ml and that helps through the tube. Because of drooling one side of my lips face is very red and I trying things to heal it’s self. It’s very frustrating.

 

[lgelb]

LH, I can recommend grapeseed oil extract ointment or A&D ointment (if you tolerate the scent) for the face redness/lips. And/or olive oil or more solid preparations that contain it, for chapping but in a little jar.

I would also double-check that your BiPAP mask/humidifier are working well together as the weather changes.

 

[AlDowns]

I don’t have Bulbar onset, but in January of this year, I started with a very dry mouth. Salivating stopped entirely. I am strict NPO because of my swallow reflex. I recently started mouth swabs with a variety of mouth cleansing products. That is helping a great deal.

 

[Ameeta]

Thanks for your reply. Have not tried grapeseed oil as yet. Her mouth is otherwise visibly moist and gums look healthy.
She is well hydrated. Have tried to increase hydration as well but not of much help.

 

[Ameeta]

Thanks. For drooling my mom keeps dabbing with a dry soft face towel. I would suggest you cover the area around the mouth which is red with a lubricant like vaseline or 'ghee' frequently and gently dab the drool. Hope it heals soon.