New to Forum, not to ALS

[keed55sis]

Hi, everyone! I've been scanning some of the threads and posts and am glad to be in this group. My sister was diagonsed with ALS in August of 2007. She has experienced the losses and struggles that so many of you have had as well.

Currently, she's having lots of trouble with excessive salivation and thick secretions. Combined with the inability to swallow effectively, it's a messy and scary situation. She wears a thick towel around her neck all the time and her caregiver goes through rolls of paper towels trying to keep up with the drooling. She's tried a couple of medications, but they've only made the secretions thicker and harder to manage, not made the volume any less.

Has anyone tried botox injections in to the salivary glands to help control the secretions? I saw an article in Neurology Now that suggested this treatment. I also saw a comment in this forum saying that it's "not for everybody." If anyone has any more information on the subject or, better yet, personal experience, please share! If the person whose husband spent more time on the BiPap and found relief would weigh back in and explain, that'd be great, too. Thanks and God bless you all.

 

[brooksea]

I'm sorry about your sister. We had no experience with Botox, but from what I have read, it is only a temporary fix.

Welcome to the forum. I hope you will find much information to help you and your sister on this journey. You may want to post your question about Botox in the general ALS forum or the cALS forum. You will get more responses.

PS - do they have a suction machine?

 

[keed55sis]

Thanks, brooksea. Will redirect!

 

[keed55sis]

P.S., brooksea, they do have suction to try to help with this.

 

[panguinjen]

keed55sis,

My husband got the Botox injections a couple of weeks ago and they seem to be helping. He is having some issue with bleeding but I can't tell you what it's from til I get him to the dentist. I also made him bibs to wear so he's not drooling all over his clothes. He dirties 3/4 washcloths a day depending on how busy we are. Does your sister have a PEG tube yet? When she's not eating by mouth the saliva dries up some, her caregiver will worry less about her choking or aspirating food and liquids which can lead to pneumonia.

Jen

 

[keed55sis]

Thanks, Jen. My sister has had her PEG tube for several years and the saliva just keeps on coming! I wish you and your hubby lots of luck with the botox.
Kathy

 

[panguinjen]

Kathy,
Is she still eating by mouth? Rog is only using the tube...

Welcome, by the way... Great people here to help!

Jen