PALS with bad taste in mouth

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lgg

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For almost a year, my PALS said that everything he puts in his mouth, including water, tastes repugnant. Around Thanksgiving last year, he simply stopped eating because of this. After losing 25 pounds in five weeks, he agreed to drink four Ensures a day as Sawif it was a prescription. That’s all he has had (plus Gatorade) since January. He does try food, but it’s all still bad. Has this happened to anyone? Is it related to ALS. We know it isn’t a reaction to meds. Because of COVID he hasn’t seen an ENT. The appointment keeps getting changed. This disease is miserable enough without taking the joy of eating away too. I’d love to hear if anyone has gone through this and has any ideas. Leslie
 

nona

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I haven't had it to that extreme but I do quite frequently get thrush in my mouth and it throws off my taste. It hasn't affected my nutrition because most of what I take in goes through my g tube.
 

KimT

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I would caution you that Ensure isn't designed to be a meal replacement. Would he be open to eating shakes made in a blender? You really can make them in any texture that suits him and add sufficient protein powder and healthy fats to ensure he's better nourished.
 

lisa g

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I make a fresh protein shake every morning. I mix fresh veggies and fruits along with organic protein powder, pea protein milk, soy lecithin, hemp seeds, flax seeds, nutritional yeast and walnuts. With this concoction I start my day with at least 35 grams of protein and over 1, 000 calories. You can tailor it to your taste.
 

lgelb

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Other potential ingredients for smoothies, soups, etc. include eggs, nut butters, ice cream, pureed fresh meat, cream soups, whipped cream, jelly/honey/maple syrup (for flavor), canned fruits, and so on. I would make sure oral hygiene is not an issue, hydration is sufficient, and that any allergies/GERD are treated as nasal drip certainly affects taste. I am also wondering if depression could be affecting his appetite, but you would know that best.

As far as water, I'm also assuming you've tried flavored water, chilled.
 

vltsra

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My PALS was complaining a lot about a bad taste in his mouth. He had lost his appetite last year about the time he started to need the bipap. He lost a lot of weight; I worked very hard to put some weight back on him. I gave him a lot of ice cream, made eggs with cheese and cream in them, and added butter or other fats to increase the calories.

We put him on omeprazole and it helped him with the bad taste in his mouth. He does still complain about nasal drip (probably exacerbated by the nasal pillows) and his appetite is not what it was, but he is still eating by mouth for now.

V
 

Bestfriends14

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My PALS has a bad taste in his mouth, too. He enjoys things that would be for a very young child such as fruit smoothies, peanut butter and jam on toast, pepperoni sticks, and other more basic foods. He used to eat all types of things but lately, not so much. Says everything tastes gross, so he now eats whatever he thinks tastes good just so he can get calories.

V, that's when my PALS started to dislike food, as well; about month after starting the bipap, I believe.
 

ReginaS

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My PALS was talking about that nothing tasted "right" any longer and he could not enjoy food the way he had before. Not much tasted good or as good as it had before. He also thought that the consistency of his saliva had changed.
 

jethro

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i dont have a bad taste - i have no taste at all. it started 2 years ago. at that time i had no problem with speech, now i have. since then i lost app 25 pounds. i eat now only because i dont want to lose weight.
 

Blackeyes

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I read this study when my husband started loosing his desire for food because the taste had changed.
Some ALS patients report taste changes that may decrease their oral intake and nutritional status. This study examined whether focal taste damage occurs in ALS patients compared to age/gender-matched adult healthy controls. An abbreviated Spatial Taste Test was administered to the fungiform and circumvallate papillae. Compared to healthy controls, ALS patients exhibited significantly lower taste intensities across the four basic tastes and significantly lower taste intensities at both the fungiform and vallate papillae, but no significant difference in whole mouth taste intensities. Seven out of nine ALS patients with self reported altered taste had tongue fasciculations, involuntary movements within the tongue dorsum due to lower motor neuron impairment (a common sign of bulbar ALS). Additionally, for patients taking riluzole taste perception at the fungiform papillae appears to be further reduced relative to the vallate papillae. This study suggests ALS decreases taste at both the fungiform and vallate papillae. In addition, riluzole may further damage the chorda tympani.
 

lgg

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Thank you all for your insight and advice. I’m glad we are not alone. I’ll take some of what you’ve said to the doctors who are stumped. As for smoothies, flavored water, etc. my PALS is an equal opportunity consumer of all food, solid and liquid. It all tastes bad. It’s not his appetite, but he stubbornly won’t eat what doesn’t taste like it’s supposed to taste. His dental and hygienist appointments have been cancelled because of Covid. Again thank you. Leslie
 

jethro

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igg - if als gives you lemons make lemonade; feed him with caloric food 'cause taste doesnt matter anymore. i take food that i woudnt take if my sense of taste is ok. o gained 5 pounds.
 
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