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Thread: Peg feed advice please

  1. #51
    Forum Member Sueb's Avatar
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    Thanks Barry and Shrew I hope he is too. I will pass on your best wishes Barry and hopefully he will be well enough for the next meeting.

    Sue

  2. #52
    Forum Member Lynne K's Avatar
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    Thanks for the info Ellie. You are a star. Lynne x
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  3. #53
    Forum Member Ellie's Avatar
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    Sue, it took me 10 days to work up to comfortably tolerating continuous feeding at 125mls/hr - started off @25 for 3 days, then upped in increments of 25s untilI had feed at 125mls/h on day 10

    But... I had the luxury of eating orally too, so there wasn't the urgency of "getting the calories into me" so to speak.

    I'm sure he'll get there.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  4. #54
    Forum Member Kayleigh's Avatar
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    Hi Sue,
    I hope Steve is starting to feel much better. Hopefully he will be well enough to return home very soon.
    Love to you both,
    Kayleigh x
    Last edited by Kayleigh; 26th March 2019 at 13:22.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  5. #55
    Forum Member Terry's Avatar
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    Hi Sue,

    I hope that Steve feels a bit better and that the meds soon start to work.

    Always consider trying to transfer him to the hospice because they generally have a lot more care available and are used to Mnd people. Many of us have been in them.

    Love Terry

  6. #56
    Forum Member Sueb's Avatar
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    Hi
    Thank you everyone. Steve is obviously very tired. He is using cough assist to get the secretions up and the physios come 4 or more times a day. They are very happy with him. He will taking the cough assist home with and the family are coming in for training.

    Ellie thanks, Steve to have tolerated the feed better today and they been able to increase to 75mls. He is a bit frightened about eating at the moment until the infection is better, he doesn’t want to undo all the work he has done, but will try again once home.

    Terry we are in an excellent ward in hospital. They have had MND patients before and are very aware of his needs. Our MND nurses and respiratory nurse also come to see him regularly.

    Sue

  7. #57
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    Hi Lynne
    I have my first visit to the clinic in early May. I bet a peg will be mentioned. I am not sure yet what to do. I suppose everyone is different.
    Sheila

  8. #58
    Forum Member Lynne K's Avatar
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    Good luck Sheila, Lynne x
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  9. #59
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    just reading this thread makes me wonder how I will go on when I need a PEG. I weigh 115kgs, I reckon i'll have to get Dyno rod to fit my PEG

  10. #60
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    Mick is about 106kg. He had a rig January.

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