ALSforums is an open support community for individuals affected MND and ALS.  We encourage you to join our support group to ask questions and to share your experiences with ALS and MND.  We offer tips about ALS, help, care, support and friendship - join today.




View Full Version : Feeding Formula Suggestions


Jp9
03-04-2007, 01:49 PM
Hi everybody,

I have a question about feeding formulas (for patient with feeding tube). My mom is currently on feeding tube, as she can no longer have food any other way. Her feeding formula is Jevity 1.2 cal (high-protein nutrition with fiber), and she gets 1300 calories a day.
She noticed, that several people on these forums posted that they add various supplements to they feeding formulas, or mix and match formulas together for the best results. My mom would like to find out, what formulas work best for people, and if somebody can recommend anything to improve her diet and energy level.

Thanks in advance,

Joe

lunarruna
03-04-2007, 09:41 PM
The Jevity is a pretty complete formula. You just have to watch for weight loss or gain and adjust how much. My husband lost some weight on the 1.2 and he switched to the 1.5 (higher calorie) --he takes 5 cans a day. Depends on how active you are, etc.
The only supplement my husband takes is acidophilus powder during times when he has antibiotics. He used to take lots of supplements when first dxed to see if it would help slow his progression. But he is pretty much as advanced as you can be (complete paralysis, bipap 24/7 etc) so doesnt bother to take anymore.
Good Luck, Beth

quadbliss
03-04-2007, 09:55 PM
Hi Joe,

I use two different foods, Compleat made from whole foods, and Diabetesource, not because I am diabetic, but because it was one of the only foods we could find without a milk base. We also supplement with other whole foods such as avocado, baby foods, and health juices such as Odwalla Super Food.

Mike

midwestgirl
03-05-2007, 08:19 AM
This is totally unrelated to supplements for feeding tubes but ... I recently met someone at an ALS support group meeting who has a feeding tube and he said he was (is?) an avid coffee drinker. He adds 1/2 cup of coffee to his feeding tube everyday. I just would never have thought of that, but being an avid coffee drinker myself, it just seems like one small thing that can be done that might help someone.

caring daughter
03-05-2007, 01:53 PM
My dad has had a feeding tube since mid-January (nothing by mouth since that day). He is on jevity and he takes supplements from a herbalist he sees on a regular basis. My dad has seen a nutritionist twice since he has had his tube put in. If you have access to a nutritionist they may be able to offer some options.

liz
03-05-2007, 06:19 PM
At the risk of sounding like the town drunk......once you have a feeding tube is there any way to enjoy an alcoholic beverage once in a while? Or will I not care any more?

Anonymous ;)

Jane
03-05-2007, 06:27 PM
Hello, we used a supplement called Peptomin (spelling?). It helped to maintain weight. We used 4-5 cans per day. One for each meal and more with each dose of meds around the clock. Helped to protect the stomach and also got in a little more nutrition. Hope this of some help.
take care Jane

quadbliss
03-05-2007, 06:37 PM
midwestgirl, I usually have a daily cup of green tea through my PEG. In addition to the caffeine, the warmth feels good.

Liz, I have been known to have the occasional Scotch. :lol:

Mike

lunarruna
03-05-2007, 08:34 PM
Regarding coffee and alcohol in PEG tubes---sure!
My husband stopped both during his loss of limb use because he just felt better without it and was gettign used to muscle relaxants. Now that he is fully paralyzed, he enjoys coffee inthe morning and some beers inthe evening. The carbonation of the beer makes it a little tricky to pour in, just have to do it slowly and take care to pour down the side of the syringe. Many people enjoy wine.
Cheers! Beth


    
   
   
   
  ALSforums - Get help and support with ALS/MND