Old 08-14-2018, 08:54 AM #1 (permalink)
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Default weight and supplementation frustration

My weight has been steadily dropping, and I was re-assessed by the nutritionist regarding my tube supplementation. I was supplementing about one carton per day, and she said she wanted me to gain 10-20 lbs, and changed my prescription to 4.5 cartons per day. Part of the reason for the massive volume is I insisted on sticking with Kate Farms, which I like because it has real ingredients not just corn syrup. But it is a 1.0 formula, not 1.5 or 2.0.

I was 100 lbs the first day. I did the 4.5 cartons but the massive increase in volume made me feel very sick to my stomach and I couldn't manage to eat anything by mouth in addition to it. But the next morning my weight had gone up to 102. But I just couldn't do that much again so I only did 3 cartons that day plus food by mouth. The last three days I have done the same, 3 cartons, plus some food by mouth. But my weight is just stable, not up, not down. Just 102.

I feel I'm at my limit and my poor stomach is always full because in addition to the formula and food, I have a 2x daily medication mixed with 8oz water, plus I do metamucil mixed with water. It's like all day long something is going in.

Does anyone have any advice? I feel overwhelmed and frustrated.
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Old 08-14-2018, 08:59 AM #2 (permalink)
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Default Re: weight and supplementation frustration

You may have to work up to it. How long have you been trying?

And I know I am a terrible nag but what is happening with the breathing? If that is the issue or a contributing issue you need to fix that for this to work.

Can you concoct a smoothie that is more calorie dense than Kate Farms?
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Old 08-14-2018, 09:28 AM #3 (permalink)
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Default Re: weight and supplementation frustration

this is extremely important and can help you maximize longevity!

get that bipap going now!

you do need to gain weight. Try adding extra formula slowly. I could not tolerate a box at once so use a gravity bag. A more calories dense formula would help you not feel so full.

I believe I'm still here only because of early breathing intervention and weighing a little more than I used to! Probably 150 pounds but I'm only five ft. Four inch.

these are the most important things you can do.
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Old 08-14-2018, 10:12 AM #4 (permalink)
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Default Re: weight and supplementation frustration

They are going to do more breathing tests/assessment, but I asked them to hold off until Aug 28th when my kids are back in school because my husband really can't take any more time off work. I will pressure them about the bipap.

I do know that breathing aside I was not taking enough calories in before, so the supplementation is legitimately needed. Has anyone tried mixing coconut oil with their formula, just to add extra fat? I am not in a position to make smoothies. My hands don;t work enough for that and my husband has so much on his plate, it's not something he has time for.
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Old 08-14-2018, 10:50 AM #5 (permalink)
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Default Re: weight and supplementation frustration

Coconut oil is a great way to add healthy fat calories. I put it in smoothies all the time. I see no reason it couldn’t be added to tube feedings.
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Old 08-14-2018, 11:59 AM #6 (permalink)
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Default Re: weight and supplementation frustration

Kristina,

I would blend an avocado, some coconut oil, in coconut milk (dairy can cause constipation). Start slowly if you aren't used to coconut oil. You can throw in some blueberries for added fiber. That can easily amount to anywhere from 700-1,000 calories, depending on how much coconut oil you use. If you wanted to replace one of your boxes with it you can add some protein powder.

Nikki is right about the Trilogy. PALS burn more calories when it's harder to breathe. I would push them hard.

Isn't there someone who can blend it and put it in your refrigerator?
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Old 08-14-2018, 02:59 PM #7 (permalink)
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Default Re: weight and supplementation frustration

A good smoothie made without dairy products can be made up then portioned and it keeps in the fridge really well for days on end.

I know you feel your husband is busy, but you need help. He can make up a few big batches one night a week, or on a weekend and leave the fridge stocked with choices.

You could also look into a pump and have the feeding done slowly overnight and then during the day you can just take in what you want most.

I know you know, but getting that bipap sorted super fast is critical to you maintaining quality of life - that energy drain and bloated feeling together is just awful.
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Old 08-14-2018, 07:00 PM #8 (permalink)
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Default Re: weight and supplementation frustration

Kristina,

Without knowing what the 2x med is, not all need 8 oz of water, some are available as liquids, etc. -- worth exploring if feasible.

For denser feeds, beyond what has been mentioned, nut butters, chicken, cooked eggs...it's not just about having a lot of fat, but a mix with protein for greater digestibility.

+1 for BiPAP --
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Old 08-15-2018, 08:54 AM #9 (permalink)
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Default Re: weight and supplementation frustration

igelb, it's a clinical trial drug the protocol from which i can't deviate and it's to be mixed with 8 oz water. My other meds a 3x day and I mix less water for those but again it's yet more volume going in.

Thanks all I think im adjusting to the new routine a bit more today. Thank you for the ideas.
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