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Thread: Peg feed advice please

  1. #11
    Forum Member Pinkelle's Avatar
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    Ive been on overnight feeds since end of October. I loat a lot of weight previously to this. I do eat theought the day to compliment this but i cant seem to put any weight on either. Im going ring the nutricia dietician and have a chat.

  2. #12
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    hi Pink

    how much do you have over 24hrs? and what do you have? it is not fun being so skinny!
    best wishes

    Sarah x

  3. #13
    Forum Member Kayleigh's Avatar
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    I enjoy getting extra calories by eating lots of Ben & Jerry's ice cream!
    Kayleigh x

  4. #14
    Forum Member Ellie's Avatar
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    Hi Kayleigh,

    Remember that some people on the Forum are nil-by-mouth because they can no longer swallow safely

    Yes, even ice cream - although I can still swallow some foodstuff, I can't manage ice cream or similar consistencies as they are too runny, strange though it sounds. Though that doesn't stop the family eating bowls of it in front of me!!!

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  5. #15
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    Hi

    Icecream is a funny one isn't it because some bits can melt and cause coughing and I have to hold it in my mouth for a while and then swallow , I find custard and yogurt easier

    It's strange the things you can and can't eat isn't it? I can eat chicken and duck and fish in small amounts but not potato or fruit x

  6. #16
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    Maybe we can share some ideas? I like salmon with mayo and spring onions chopped up small , I crave a bit of flavour ,chicken sliced never cubed , mixed with mayo and pesto, I only eat a little bit but it satisfies my tastebuds!

    Sarah x

  7. #17
    Forum Member Pinkelle's Avatar
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    Sarah my feed is 750 calories overnight. I try to eat through the day even though I don't have an appetite. I reckon somewhere in the region of 800 calories.

  8. #18
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    I have lost weight since I was diagnosed in January. Anxiety and stress about it all I think. Dietician is coming out on Monday. So I expect I will get lots of advice. I weigh 7 stone.

    Take care all
    Sheila

  9. #19
    Forum Member Streetwise's Avatar
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    try adding extra virgin olive oil and sunflower oil to savoury things and coconut oil to sweet things they are both high in fat also appear to be very good for the skin

  10. #20
    Forum Member Ellie's Avatar
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    Sarah, I know exactly what you mean about wanting tasty meals!

    Because I only eat lunch - and I know I am lucky to be able to - it has to be nice! Everything has to be chopped up small and I can't manage dry food. My tongue doesn't work so I can't move food around my mouth, but my swallow is pretty good (relatively speaking)

    Some of my usuals are: tuna mixed with mayo, olives, peppers, tomatoes (or whatever is in the fridge)

    Hard boiled eggs mixed with mayo, grated cheese, spring onion, tomatoes, crumbled Carr's crispbreads (they are soft and not crumby)

    Stir fry veg with noodles and packet sauce.

    Omelettes or fritatas packed with anything and everything.

    Halloumi in semolina, griddled, with salad, red onion, olives, coleslaw.

    Pasta (I break up spaghetti before it's cooked) with mushrooms, tomatoes/peppers, broccoli in creme fraiche.

    And garlic in whatever I can.

    I don't eat meat and only recently started eating tuna.

    My carers cook for me. My target intake is 1800 cals per day.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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