Nutrition Question

Hi everyone. I was wondering if anyone's had experience with someone who says they're full or not hungry? I know getting maximum calories is important and I'm concerned that if they don't eat on their own, they will need to start using the PEG tube. Would love to hear others' experiences. Thanks!

Lack of appetite exacerbated by the increased calorie needs seems to be fairly common.

I am ~2 years post Dx. My appetite was fine for the 12-18 months but then started dropping. My records show I've lost ~20lbs over the last year.

I finally met with a nutritionist (should have done it sooner) and she recommended that I up my intake to ~2600 calories daily. It is really hard to cram that much food down my gullet. Candy bars are a chore...

My day now starts with a smoothie comprised of 1 Boost+, a full banana, a partial scoop of protein powder and ~2Tbl of peanut butter.

I was also told to have snacks (snack being something like 1 cup of full-fat yogurt with 1 cup heavy syrup fruit) at 2pm and 8pm.

As Greg says come and can become a huge problem. Sometimes it is just too much energy required to feed and eat so things that require a lot of chewing and cutting are not going to work. Occasionally another issue is constipation which is common for PALS
Feeding tube should not be viewed as a bad thing. It can bring many benefits even when you can still swallow fairly well. If you are tired you can choose to do a feeding once in a while. And it will be there when you really need it. Lots of PALS wait too long until they are badly malnourished and have a hard time getting the tube and then their bodies don't absorb as well as they would have earlier

Thanks. He had the tube inserted last week and is still able to eat at this time.

If he's losing weight, it's time for the tube, at least for supplements. Due to fear of pneumonia from aspiration, I gave up eating in May, and have now stabilized at nine pounds heavier. I take 6-7 Boost+ per day, 360 calories each.

I am [almost] never hungry; however weight loss = giving in to the monster. my formula:

Fruit smoothie 350 cals 2x / day = 700 cals
chocolate milk/banana/2 tbls peanut butter 700 cals 2x /day = 1400
gazpacho 150 cals 2x /day = 300 cals plus the fiber to keep the plumbing going

haven't eaten since 2/1014, lost 4 lbs +-

Thats why we do so many fruit smoothies. Steve needs calories, is thirsty but not hungry. You can use juice with fruit and a greek yogurt for calories.

> and a greek yogurt for calories.

go with the full-fat yogurt.

He goes from saying he has no appetite, to he's full, to nothing tastes good. We're really not sure what the issue is.

The digestive system starts to slow down in ALS. It's one of those vicious circle kind of things.

It's really time to get to a nutrition specialist and make a plan.

You should be able to get a good lot of calories into him through the peg. The way it was said to Chris was that he can eat whatever his greatest whims desire in whatever amount he wants, small or large, and purely for the pleasure of the taste. The peg will allow all the fluids and calories he needs, the mouth is optional now and should be only for enjoyment.

The longer you don't get enough calories into him and keep his digestive system moving along, the more it will slow down and the harder it will be to get it going again. Don't ever let this make you feel guilty if you can't get him eating. I said the above but my Chris didn't agree to the peg until he was emaciated and dehydrated and we never got his digestive system turned around and functioning well again.

>He goes from saying he has no appetite ... to nothing tastes good

same here :-(