Botox?

[LauraW]

Has anyone with excess saliva issues done the botox injections in the salivatory glands? Dr. Mitsumoto...Mom"s ALS Dr. has suggested it. I just read one old post that really scared me. I definitely do not want it to make things worse for her but the mucus is not getting better and when the weather changes (which here in NY is just about every day) she is awake many times throughout the night. Any thoughts?

 

[lisaann1170]

I wish I had some experiences to share with you, but I thought I'd post to say that my dad is at the same point. His illness has progressed rapidly and he chokes frequently. Scares the heck out of all of us (including him). He can't for for more than two hours without the cough assist...and that is around the clock. Like your mom, he needs some relief.

 

[sesl]

My mother has made an appointment next week to get botox. I'd like to read that old post to know what might go wrong!

sesl

 

[cukita99]

i tried botax on my legs and it didnt work.

 

[serenade]

I use the transderm scopaline patch it helps with the saliva.

 

[4afriend]

let me know how it goes too hopefully well.

 

[LauraW]

Mom tried the patch and it made her dizzy and made her breathing worse. She is on a vent and we use the cough assist and a suction machine. I use mucinex and crushed up papaya that she puts on the back of her tongue...it is the enzyme papain that works. The old post I found when I did a search on this site for botox. SESL, please let me know how your Mother does. My Mom can't wait.

 

[JOSIEM02]

My mother in law was asked if she was interested in botox. We are not sure if insurance covers this yet. I will let you know if she goes thru with this.

 

[nsmitro]

12/09 i had botox injected into both salivary glands and into front resulting in some decrease in saliva.
I am now biting my inner cheeks. I don't if that is a result of the botox injection.

 

[Markbreton]

My wife tammy who is in late stages has been getting botox injections for 1.5 years every 3 months and she has almost NO drooling. apparently it does not work for everyone, but I believe it all has to do with the Dr. who injects it. The glands are very small and hitting them is difficult. Tammy gets injected into 2 of the glands on the left side and 2 on the right side. Definitely works for her!
Mark

 

[LauraW]

Thank you. mom is going to have it done April 20th. I will let you all know how it goes.

 

[Andy2020]

Has anyone with excess saliva issues done the botox injections in the salivatory glands? Dr. Mitsumoto...Mom"s ALS Dr. has suggested it. I just read one old post that really scared me. I definitely do not want it to make things worse for her but the mucus is not getting better and when the weather changes (which here in NY is just about every day) she is awake many times throughout the night. Any thoughts?

Tell her NOT to do Botox. It's a poison that would be even more terrible to inject in an ALS patient.

Check out the thread about NAC "N-acetyl-L-cysteine" on the Patients Like Me in the ALS forum.

You can do a google search for "NAC Patients Like ME ALS".


Here is the definition for NAC:

"NAC SUSTAIN® is in a bilayer Quick Release / Sustained Release format of N-ACETYL-L-CYSTEINE (NAC), an antioxidant amino acid and a precursor to the critical antioxidant glutathione."


Currently 34 ALS patients are using NAC and have expressed very positive improvements in saliva and breathing problems.

 

[trudy]

My husband is about to have botox injections and your message has eased my fears. Thank you.

My wife tammy who is in late stages has been getting botox injections for 1.5 years every 3 months and she has almost NO drooling. apparently it does not work for everyone, but I believe it all has to do with the Dr. who injects it. The glands are very small and hitting them is difficult. Tammy gets injected into 2 of the glands on the left side and 2 on the right side. Definitely works for her!
Mark

 

[JOSIEM02]

My MIL is having Botox injections tomorrow. I will give you an update as soon as I can. Josie

 

[NHAMM]

I would like to get a update from any of you all that have had experience with botox injections. My mother goes to the doctor in a week or so and we were wondering if this is something that we should look into. We are approaching the 1 year anniversary mark since she has been diagnosed. Today she was having such a hard time with acid reflux and thick mucous in her throat and drooling. So any recent feedback any of you can share would be appreciated.

God Bless