Botox of Salivary Glands

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lindaerm

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Hello,

I am seeking guidance from anyone who has tried Botox injections of the Salivary Glands to decrease secretions associated with PBP. My mom is 71 and is three years into this disease. She has a feeding tube and is not allowed to take anything orally. She has tried numerous medications and patches but all have disagreed with her. She uses a cough assist machine very frequently to help her get rid of the build up in her throat, but it is so frequent that it is wearing her out. We are desperate to find something that will make her more comfortable, and Botox is one measure we heard about. Has anyone tried it? If so, I would be so grateful to hear about your experience.

You group seem wonderfully supportive and as a newcomer I appreciate the help so much!
Thanks,
Linda
 

CindyM

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Hi Linda- welcome to our little corner of the internet. I don't have any advice but saw that our long-time PALs and CALS have not checked in yet so I wanted to at least send you a welcome. I am sure somebody will have some thoughts on your question. Hang in. Cindy
 

lindaerm

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Hi Cindy, Thanks for your reply and for the welcome. I will stay tuned. Linda
 

Midnight

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I don't know know much about Botox related to the salivary glands but I would encourage you to inquire about Botox related to the acceleration of ALS. If you google to the botox official website you can checkout their full array of side effects, including the acceleration of neeuromuscular disorders...including ALS. I'd find the link for you, except I am typing on my phone. I know they do use Botox for migraines and as well as for the cosmetic applications, but I have no idea what it would do to somebody already diagnosed. Either way, it is very caring of you to be concerned. Best of luck to you & yours.
 

ilovemymom

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Hi Linda-
My mom has consistently been receiving botox injections in the salivary glands and found it very helpful for close to 1 yr. With her most recent injection in January she has not felt the improvement that it offered in the past but she now is taking no food or liquids orally. From our experience, the botox was helpful as long as my mom was still able to swallow. If you do go the botox route - be sure NOT to wash your face (unless very delicately) for at least 24-48 hrs. - the botox can paralyze other muscles in the face and affect your smile, speech, etc.

Best of luck to you.

m
 

ilovemymom

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One other thing...

My mom has found the oral swabs (mint and plain) helpful since she cannot swallow. She has also tried a number of Rx "drying agents" but found that they make her mouth SO dry that it is uncomfortable. We found the plain swabs at our local pharmacy and I ordered the mint from amazon. She likes to dip the plain swab in cola or the mint swab in water. It certainly doesn't help with all of the secretions but this inexpensive remedy has helped with the terrible taste in her mouth.

If you haven't already tried a suction device - the Devilbliss Home Health Suction unit that Kiaser DME provided has been very helpful throughout the day and particularly after use of the cough assist.

Hope this information helps in some way. I'm sure your mom appreciates that you are looking for ways to help her feel more comfortable. I know I often feel helpless against this disease but I have found a wealth of information on this forum that has really helped.

Best of luck to you.
m
 
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