How long did you have to wait after peg to up your calories?

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GilWest

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Mom is getting 1500 calories a day. She has lost over 20 pounds which was the reason for the tube in the first place. The docs tell me she will maintain at 1500 cals a day. I say that she needs more. I think I convinced them to go to 2,000. Did you or your PALS have to wait before upping calories? On a good note, I did get in with a neuro at the hospital that has done more and answered more of our questions than the one at the ALS clinic ever did. He basically mapped out a plan from now until the end complete with meds to try and off-label meds we can use.
 
After having to try a couple of formulas to get one she could tolerate my sister also needed more calories as she was dangerously underweight. After tolerating a couple of days of the formula they gave us a higher calorie version of the same type of formula so more calories in same volume. However they also insisted to switch from intermittent gravity feeding to continuous pump feed originally 14 hours then quite quickly were able to decrease the time. They also prescribed a supplement of the same brand and strength as the regular formula to gravity feed at some point during the off time from the pump.
 
PALS definitely do better if they are getting LOTS of calories.

Is your mum gravity or pump feeding? I'm presuming gravity.

I would go by what she can tolerate - does she have a positive attitude to the peg? If so, try giving her an extra feed each day, then if she can tolerate more, try starting to replace some feeds with higher calorie feeds.

Our dietician did this excellent map on paper for us, I have a copy in my "Chris" files, and should look at it if you are interested to show how you can increase.

My husband never tolerated feeds well, but refused a night pump outright. With FTD it was so difficult. He chose the peg, but he chose it once he was already at starvation point, and he found peg feeds made him nauseous no matter what we did. So he refused to let me give him high enough calories and continued to lose weight.
 
poop went to moderation, stayed tuned!
 
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