Newly diagnosed

[Greeneyes]

Any suggestions on how many calories a day a person with ALS should be taken in daily. My brother had his peg tube placed recently and has started on Jevity. He was is still eating but appetite has decreased and chewing is more difficult. I am worried that he is not getting enough calories to maintain his weight. He has lost a lot since being diagnosed. I know people with ALS need more calories to sustain weight but how many is needed.

 

[Nikki J]

It really is individual like so many things with ALS. Some PALS are hypermetabolic and require 3000 calories or more a day even if inactive. Others are not If he is at a good weight for himself then he needs to maintain whatever that takes

many of us here believe there are much better options than jevity. Either home blended food or real food formula
jevity ingredients
Water, Corn Maltodextrin, Corn Syrup Solids, Sodium Caseinate, Canola Oil, Corn Oil, Short-chain Fructooligosaccharides, Soy Protein Isolate, Medium Chain Triglycerides, Calcium Caseinate, Oat Fiber. Less than 0.5% of: Soy Fiber, Potassium Citrate...
ingredients of a random real food formula Pineapple Juice, Ground Beef, Potatoes, Spinach, Grapeseed Oil

 

[Mary2]

Liquid Hope has been recommended by some on the Forum. We are paying 8.00 a package to give my PALS one package a day. The insurance is paying for Kate Farms. I don't know where Kate Farms rates compared to Jevity. The Liquid Hope Package ingredients say: water, and then the following organic: beans, green peas, carrots, flax oil, pea protein, whole grain brown rice, sprouted quinoa, sweet potato, broccoli, almond butter and then a vitamin blend. 450 calories in a package.

 

[lgelb]

I would recommend also looking at Whole Story for a balance between nutrition, sugars, sodium, fiber, etc. It is a powder that you mix with the liquid of your choice to make the tube formula.

 

[MupstateNY]

I'm getting a feeding tube in a couple days, and the Interventional Radiology department wants me to meet with a nutritionist. I've noticed that hospitals and ALS Centers seem to have a nutritionist on staff. Would that be helpful for you guys? Would it be helpful to have a telemed appointment with a nutritionist? Can you request that at the place that inserted the feeding tube?

 

[Mary2]

I may be wrong and correct me if I am, but I bet it was a nutritionist who steered Greeneyes brother and his wife towards the Jevity. The nutritionists know what they can get insurance to cover.

 

[lgelb]

They know what the defaults are, but what insurance will cover isn't written in stone, especially if no one questions the defaults. "Real food" formulas are increasing in the market, and payors are more often covering them. Most of the manufacturers have examples of LMN letters that you can ask your doc to tailor/sign. But I would also say, if you're not able to blend real food to put in the tube, there're few better uses of your money that I can think of, than to give a PALS the food they need.

Dieticians may or may not know ALS. If/as they start talking about calories without talking about nutrients, time to close your ears.

 

[Greeneyes]

I was going to suggest that my brother meet with the nutritionist at his next apt to discuss all the options to get more calories in. He has lost about 60 pounds and we don’t want him to lose any more. We were hoping that he would gain a few pounds.

 

[Greeneyes]

I will look into this. Thank you.

 

[Greeneyes]

I was not aware that you could blend home foods to put through your peg tube. I will suggest this to him.

 

[Greeneyes]

Thank you for your suggestions.

 

[lgelb]

You can blend almost anything in a good Ninja or Vitamix blender , among others-- you don't need to spend a ton these days to get pretty smooth liquids -- even purée meats, blend in ice cream, yogurt, nut butters, produce, etc. For some concoctions, straining may be necessary.

This enables you to customize to what diet is most comfortable for a PALS, e.g., if someone can't eat dairy, certain fruits, etc. Pineapple and papaya juice help some with mucus, and warm liquids can help with constipation. Several sites feature tube recipes, and there are reddit and FB groups. If Googling, you can look for blender diet or blenderized tube feeding.

You can also do a search here on this or anything else, using the search button up top.

 

[affected]

I will just warn - most nutritionists/dieticians tell you that you can't blend real food for a host of reasons. My favourite is that their diet won't be balanced. I know it is different putting food directly into the stomach rather than chewing and swallowing, but don't believe a word of it.

 

[MupstateNY]

Affected, that is shocking. Thanks for the warning.

I think I know what a well-balanced diet is! A cooked green vegetable every day, something orange for vit. A from time to time, protein, some fats in moderation, some fruit, some carbs in moderation.

 

[Doing My Best]

There's a registered dietician who is part of our ALS Clinic and who has been very helpful throughout, first with recommendations as chewing and swallowing got harder and weight loss started, and then as my husband has been adjusting to tube feeding over the past several weeks. She had him try Kate Farms and Liquid Hope, and they have both been fine. I think knowing that a nutritionist has expertise working with ALS would be key, but if that's the case, at least in our experience it's been valuable guidance. Steve says he feels much better since going on the feeding tube; he feels like he's getting both more calories and better balance. We have always eaten pretty healthily but it's kind of nice to know everything he needs is being provided without my having to think about details. We just got it approved for Medicare coverage this week so that's even better.