Feeding Tube Formulas

[christinea0021]

Hi, first I want to thank everyone for taking time to share their stories, experiences and expertise. All of you are doing a tremendous service.

I recently read the ingredients of the Jevity formula that my PALS has been taking in and was shocked to learn how much sugar is in it. I am looking to get her on a formula that is sugar free. Has anyone else on here been able to fine one that does not contain sugar and what was your experience with it?

Any advice or direction that you can give would be so appreciated. Bless you all!

- Christine

 

[lgelb]

Hi, Christine, the 3 formulas that are not corn syrup-based are:

Real Foods Blends
Liquid Hope
Kate Farm

Check with your PALS' plan's DME or the above suppliers about reimbursement. Digestive systems differ so your PALS may do better with one or the other.

Another option, full or part-time: many CALS here simply blend regular food [often with high fat/high protein ingredients to meet nutritional needs] with a high power blender.

Best,
Laurie

 

[Vincent]

Do not be afraid of a high carb formula. There are studies that show a high carb diet can be of great benefit for PALS. Not only that but a BMI between 30-35 seems to have a longer life associated with it. I am 6'1" and weigh 275 lbs. I had first symptoms in 2011 and was diagnosed in 2014. I still walk, my arms are still usable. My breathing is below 50% and I have a g-tube I use for meds only so far. I don't know if it is just slow progression or weather it is the diet, but I'm not changing anything. Here's the link to an article from ALSTDI:Story: Weighing in on the high fat diet in ALS | ALS Therapy Development Institute
Vincent

 

[Staying strong]

We saw great results with " Liquid Hope " Over a bunch we tried. We were lucky that my insurance paid for it. My Pals gained weight and strength when we switched to it..

 

[lgelb]

Again, I don't think we should believe that high carb (especially from formula based on corn syrup, a simple sugar as opposed to complex carbs like whole grains), is the only way to achieve weight maintenance/gain/optimal BMI.

Many of our PALS have been able to do all of the above largely with complex carbs/proteins/fats. There's no basis as yet to believe that ALS changes the biochemistry of the pancreas, which finds it very difficult to handle a large influx of simple sugar -- why you get sugar highs and subsequent craters from huge releases of insulin.

 

[KimT]

I'm not a doctor but I have studied human nutrition at the doctoral level as relates to normals and various diseases. I agree with Laurie's posts. You can achieve an extremely high calorie, healthy diet that is balanced and stays away from simple carbohydrates (sucrose, corn syrup, etc.) My first choice would be to blend my own with a Vitamix and introduce one of the three Laurie mentioned to test tolerance.

There is a lot of emerging evidence that good fat is neuroprotective. I include lots of avocados, nut butters, and coconut oil in my food. I do think there might be a psychological benefit to feeding with the same food as the family eats, at least some of the time.

 

[affected]

Definitely I've always understood that we need a high calorie diet, not necessarily a high sugar diet. Those highs and lows are never going to make any PALS feel good and probably the CALS will suffer for it too