ALS Bulbar

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Radha

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Hello everyone, This is the first time I am putting a post in this group. This is for my sister who lives in Malaysia. From the information I got from this group, I think she has bulbar. I am not sure. Her present condition is very bad. She can’t swallow even a drop of water and she has a lot of saliva coming out. She is fed on peg tube and full time on breathing device. I just wanted to know is there any medication to reduce saliva. She was given some medicine bbut it dries the saliva and gets chalked in the neck region and she literally struggles to remove it. We are from kerala india. We are planning to try some ayurvedic treatment. Hope it will give her some relief. Is there any specific food or drink that helps to control the saliva ?
 

Nikki J

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I am sorry about your sister. It does not sound like you mean saliva. if you dry saliva which is essentially water there isn’t really anything left. Is it more phlegm? The approach would be different
 

Radha

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Loved one DX
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KL
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Ottappalam
Yea, phlegm that gets thick and gets stuck. The drooling is caused by the excessive saliva producing, hence when she takes the meds, it dries up the saliva but then the lack of saliva/dryness isn’t able to thin out the phlegm which then gets stuck in her throat/airway.

Bisoprolol - for palpitations
Metformin - diabetes
Amlodipine - BP
Simvastatine - cholesterol (discontinued due to some link to ALS/MND)
Riluzole - ALS

For hypersalivation:
Glycopyrrolate- stopped due to intolerance
Scopolamine patch- she refused
She is taking the above mentioned medicines

She is using a BiPAP- home machine
 

lgelb

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Some formulas for the PEG tube can cause an allergic kind of response, especially the corn syrup-based ones, which have a lot of chemicals not found in nature, so trying a new one may help.

A calcium channel blocker (amlopodine) and beta blocker together (bisoprolol) is not a combination that is right for all people. You might ask about staying with the calcium channel blocker, which in the right dosage could address palpitations as well, or using a different CCB like diltiazem that is often used to address both.

Some of the meds on your sister's list have slow-release versions that cannot be safely crushed. Do make sure that the pills and capsules she is taking are OK to crush. This is the list of those that are not.

It was thought at one time that statins had a link to ALS, but later research suggested that it was BMI -- that there is a "sweet spot" of about 31 that may help minimize progression. So maintaining adequate weight is important.

Hydration is also an aid in reducing phlegm thickness. Thinned papaya or pineapple juice down the tube may help. Soda helps some. Original Alka Seltzer mixed with water has been used. Of course, you always want to follow with clear water in the tube.

Best,
Laurie
 
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