Nutritional concerns?

[Bummer]

Hello. My loved one is in the late stages of ALS, so she is dependent on her PEG tube for nutrition. We have been using ensure plus, usually 5 a day. She was drinking juice, but her throat is no longer allowing that. She has been having trouble with phlegm build up and nasal congestion. We currently use albuterol and guaifenesin. She is almost completely dependant on the bipap machine at this point. So my question is this: Is there anything with her diet, medications, or machine that may need tweaking to help combat this congestion? Any suggestions are beyond appreciated.

 

[lgelb]

We have had a number of threads on mucus. Search up top. Soda, hot drinks, Alka Seltzer, papaya/pineapple juice, saline products if there are clumps, are examples. Consistent humidification of the machine and room is important, as are regular filter changes/rinses if there is clogging. Make sure the humidifier water is clean. Any little irritation/allergy makes things worse. A nasal steroid may help if the nose is inflamed. Some people use a suction machine to good effect.

Best,
Laurie

 

[patoyeah]

Choking Mucus / Phlegm is common for us. The best thing i found for this is Pharma NAC, bought online... lots of water helps thin the mucus

excessive saliva is a separate issue. Any product that dries up saliva, will make Mucus thicker and more difficult

Take care,

Pat

 

[rose]

You could consider using the amino acid L- Cysteine. I purchase it in powder form which mixes easily in water. It is used as a cough medicine because it breaks disulfide bonds in mucus and liquefies it. It is also this action of breaking disulfide bonds that makes it useful in thinning the abnormally thick mucus in cystic and pulmonary fibrosis patients.

Also, cows milk can increase the production of mucous, (goats milk is okay though) maybe try some non dairy alternatives to the Ensure? It sounds like you have a lot on your plate right now, but, there are non dairy alternatives that can be used through the peg tube. Look up "Liquid Hope" and Real Food Blends. Both companies have ready to serve (via the tube) meals that are actual (non dairy) regular food. Even experiment with stocking up on baby food, enough for a few days of equivalent calories as a trial to see if her problems with all of this diminish. you can thin the baby food with juice or broth, etc, to where it is a consistency to go through her peg tube.

I have links on my website to Functional Formularies (who make Liquid Hope) and Real Food Blends, plus more information on making meals using a blender that is suitable for tube feeding.

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Good luck to you and your loved one.