Type of Food

[GXTrex]

My PALS can still take some food by mouth but was given Nutren 1.5 to supplement for now from insurance. I noticed there was a Nutren 2.0 and going forward that would be easier as it would require less feedings. Are there any negatives to using the 2.0 instead?

 

[affected]

The more calories the better! I would only look at what is used to provide the calories and steer away from corn starch products and towards real food blends.

 

[jonico]

Hi GXTrex,

I will echo Tillie's comment, "steer toward real food blends". I won't get into the weeds with our experience, but I'll just say it wasn't pleasant with non-real foods similar to Nutren. Check this out...

Ingredients in Nutren 2.0:
WATER, CORN SYRUP, MEDIUM CHAIN TRIGLYCERIDES, CANOLA OIL, SODIUM CASEINATE (MILK), SOY PROTEIN ISOLATE, MALTODEXTRIN, AND LESS THAN 2% OF CALCIUM CASEINATE, SODIUM CITRATE, CALCIUM PHOSPHATE, SOY LECITHIN, POTASSIUM CHLORIDE, CALCIUM CITRATE, MAGNESIUM PHOSPHATE, CHOLINE CHLORIDE, SODIUM ASCORBATE, POTASSIUM CITRATE, TAURINE, L-CARNITINE, MAGNESIUM OXIDE, ZINC SULFATE, FERROUS SULFATE, DL-ALPHA TOCOPHERYL ACETATE, NIACINAMIDE, CALCIUM PANTOTHENATE, MANGANESE SULFATE, PYRIDOXINE HYDROCHLORIDE, THIAMINE HYDROCHLORIDE, COPPER SULFATE, RIBOFLAVIN, BETA-CAROTENE, VITAMIN A PALMITATE, FOLIC ACID, CHROMIUM CHLORIDE, SODIUM MOLYBDATE, POTASSIUM IODIDE, SODIUM SELENITE, VITAMIN K1, BIOTIN, VITAMIN D3, VITAMIN B12

Ingredients in Liquid Hope (which my wife ate for several years via g-tube):

• filtered water
• organic garbanzo beans
• organic green peas
• organic carrots
• organic whole grain brown rice
• organic whole grain brown rice protein
• organic flax oil
• organic sprouted quinoa
• organic sweet potato
• vitamin blend
• [potassium citrate, calcium citrate, acerola (C), sodium chloride, mixed tocopherols(E), choline bitartrate, zinc citrate, biotin, niacinamide, selenium methionine, cholecalciferol (D3), pyridoxine hydrochloride(B6), riboflavin(B2), thiamine mononitrate (B1), methylcobalamin(B12)]
• organic broccoli
• organic almond butter
• organic kale
• organic garlic
• organic turmeric
• organic rosemary
• organic ginger
• organic wakame (seaweed)

As able bodied CALS, I have to imagine we'd all prefer meal # 2. Our PALS need excellent nutritional support even more than we do. It took a bit of a fight to get my wife's insurance to cover Liquid Hope at a reasonably affordable degree for us, but it was very, very much worth it.

I don't mean to make you feel bad if you don't think the difference is that big a deal to you, or it is too expensive. I'm just a pretty big proponent of real food over pseudo-food. Formulas like Liquid Hope, Kate Farms and Real Food Blends are options you might explore with your PALS insurance company. And don't take your first "no" as the final word. They almost always say no and hope that is it. Take the fight higher if you can.

All the best...Jon

 

[affected]

at the least though you can also blend that supplement with real fruits, peanut butter, quinoa, chia, coconut cream, dark chocolate. I do feel that the more real food you can use the better, but to start, if losing weight and appetite the more calories the better while you get things sorted with insurance etc

that list is impressive Jon!

 

[GXTrex]

I of course understand the importance of real food. The problem is the insurance will only cover what's cheapest first and if that isn't tolerated then they will go to the second cheapest of course. Did anyone on Medicare get something like liquid hope covered?

 

[Nikki J]

I think people have and hopefully they will chime in how.

maybe rather than trying to get a more concentrated formula though he needs not to tolerate this one? If you push for 2.0 then say it isn’t tolerated they will make you go back to 1.5.

I know his living situation is such that real food blending at home is probably impossible. You can only do what you can

 

[GXTrex]

@Nikki J I agree I think it would be better to try to get him something like Liquid Hope before going to Nutren 2.0
Are there any other real food blends to look into as well?
Is the only way to get them to change formula to say he isn't tolerating it? So far he has been alright with it but it hasnt been long as he only takes some calories via feeding tube now. I would prefer not to lie saying he cant tolerate it when he can but if that is what it takes I would.

Thanks everyone for your responses.

 

[jonico]

@GXTrex, my wife's Medicare advantage plan did cover liquid hope, but we had to push for it. And it was still pretty expensive.

After the G-tube operation a young nutritionist came to the room to discuss her diet with her. The assumption was that she would go with Jevity. The nutritionist had actually never heard of liquid hope, but my wife had done her homework and helped educate the nutritionist. She was wonderful and actually ended up advocating for Nicole with the insurance company and was able to get initial approval. I then had to work on it more once we got home such that it would continue. I can't remember the exact steps I had to go through, but we were successful.

Nicole ate liquid hope exclusively for a few years before developing type 2 diabetes. Her doctor and a nutritionist then had her Switch to glucerna to keep her blood sugar down in conjunction with Metformin. Nicole didn't tolerate the glucerna at all well and I personally semi-gradually transitioned her back to liquid hope while successfully keeping her blood sugar within an acceptable range. so, I admit I have a pretty big bias against those types of formula.

I'd encourage you, if you possibly can, to go up the food chain (no pun intended) at the insurance company and fight for it. Worst they can do is say no, but don't take your first or second no for the final answer if possible. You may even need to speak to somebody in the chief medical officer's department at the insurance Company. I did that on a couple of occasions with other coverage denials with success.

you don't need to tell them that your PALS Isn't tolerating it, or wait for him not to. Just tell them it's not an acceptable option since he was always a very healthy eater before the feeding tube. I'd even show them the comparison chart I included above.

Hope that helps! Jon

 

[Nikki J]

Google liquid hope medicare coverage. They claim it is covered. He has original medicare?

 

[GXTrex]

@Nikki J
He has original Medicare, Medicaid, and another supplemental plan I am not sure which.

@jonico
Did you have to pay out of pocket at all? I will speak to my parents and if they are on board with it I will go to the nutritionist to ask for it. It does not have a fish oil in it right? I didn't see it listed but wanted to confirm as he is Allergic to fish oil.

Does anyone know of other real food blends that I could also look into as an alternative?

 

[Nikki J]

Kate Farms or real food blends. I looked at the latter and they have details about how to get it covered. It does look to me like for that at least you need to have tried other formulas first. Worth reading through even if you go for something else. The rules may or may not be different. the nutritionist likely know what to write

 

[GXTrex]

@Nikki J

Thanks I will look into those. Can they be taken orally as well? He can swallow and it would help if he can take some by mouth daily to get used to it and ease into using the feeding tube full time. Do any of them taste decent?

 

[GXTrex]

I spoke to the nurse at the ALS clinic who said most of those organic food blends do not have all of the required vitamins/minerals (she cited magnesium, potassium, and sodium). The clinic had issues in the past where patients would get sick and have to supplement the feedings with additional nutrients which was a hassle so they prefer not to use them anymore.

 

[Nikki J]

I found that hard to believe this is Kate Farms standard formula nutrition

 

[Nikki J]

This is liquid hope. I don’t know if there is something else missing ( though I don’t see anything obvious )but it is certainly not true for the things you mentioned