Just when you think you have things figured out...

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Narrowminded

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Sooner - quick note Robinul is glycopyrrolate, just another name it goes by. Since you've already tried that, no sense mentioning that to the Dr. I know how much of a pain it is. Brian's fortunately or not, comes out around his trach for the most part so he just ends up a wet mess. I put a towel around his neck to try and collect as much as possible.

hugs,

Sue
 

ntd19

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My PAL is having the same issues, has been for a year now. The only thing not mentioned above is a suction machine. We need to use one several times a day. I even use it at night when the silva gets too bad.
 

gooseberry

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Sending you all big hugs. It is very hard to live on the rollercoaster.
 

Bestfriends14

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Sooner, in my short time on this site, you have given me good advice and a lot of kind words. While we are still too early in the disease to offer advice from my end, I do want to give big hugs to you and say that I'm thinking of you. You have a lot on the go and you, from what I have read, are a trooper.
Take good care.
 

allformom

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Soonerwife, you couldn't be more right! I often feel like we'll get things in a "good" place or have some type of handle on it and then there's something new! Today as I was giving mom a sponge bath and her jaw started popping and she was grinding her teeth and bit her lip pretty bad. I wasn't sure what to do, which is the worst feeling. I just rubbed her face with a wash cloth in hopes to relax her jaw. She started crying so hard I gave her a .25ml dose of morphine to relax her. I'm grateful for this website because this is where I find ideas and suggestions from those who have actually experienced these things. As sadden as I am by your stories, it provides the rest of us some type of hope that there may be something that might help with this symptom or that symptom. Thank you all for sharing.
 

ntd19

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We are now under hospice care, the nurse assigned to us actually worked at the ALS Clinic for a number of years so we got lucky. She told me to give my wife a small dose of morphine to help her relax. A side benefit, it helps to dry out her mouth. I only give her a very small amount at bedtime.

You might ask your doctor about it but the Clinic folks had never mentioned morphine in all our visits.
 

Manhattanite

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Another thing I don't see mentioned is Botox injections to produce less saliva. I don't have first-hand experience with it but my veterinarian's father-in-law has ALS and she says that it helped him. Our doctor warned us that our insurance would not pay for it.
 

soonerwife

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Thanks Manhattanite! I reached out about botox injections last week to our Neurologist. They told me it takes some time to get it approved but I think it may be worth a shot.
 
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My son has the same problem that you are all talking about. I am forever wiping his nose or suctioning his mouth. I have been using just plain allergy pills and now using I Guaifenesin and the allergy pills. It has slowed the dripping down quite a bit but has not stopped it. I tried the glycopyrrolate and it did diddly squat. I also give my son alka seltzer in the morning and at bed time. Haven't noticed a real big difference if any with the alka seltzer. It is certainly a challenge. God bless you
 

soonerwife

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It is definitely a challenge for sure. The alka-seltzer helps us with the thick stuff. I am surprised the glycopyrrolate didn't help. We now use Atropine drops instead of the glyco. We also use Scopolamine patch behind the ear every third day.
 
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I also tried the Scopolamine patch but that also didn't help. When you gave the glycol to your son how much did you give him a day. Jason got 1mg three times a day.
 

Narrowminded

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I'm going to try a few days w/o the glycol. I've noticed lately that his mucous seems to get worse after I give it. We will see what happens.

Hugs,

Sue
 

soonerwife

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We switched from glycol to 1% Atropine drops due to thick mucous gagging him. Now when I notice him having thick issues, they aren't as bad and I give him some Tussin.
 

Narrowminded

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Sooner - tried Atropine, that doesn't work for Brian his heart races. And he gets headaches from scop patches. I'll keep pressing forward. Thanks for the thoughts though.

Hugs,

Sue
 
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