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    #16
    Originally posted by Ellie View Post
    Dina, did they not ease you into the overnight feeds? (Nutrison?) The Nutrison is very different to Fortisips.

    At the risk of sounding 'preachy', as with all feeds, your system will get used to them, but really they should be gradually introduced to let you adjust to the new food type.

    How was last night, or should I say today?

    Love Ellie.
    Today has been "challenging"... The dietician came round today and we are changing the feed that I have. I'm not too bothered as I am likely to be in here a while longer.
    Dina

    Trying to keep positive, but not always managing.

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      #17
      Hi Dina

      Sorry to hear about your troubles. I'm living with my parents and I'm surprised at the amount of work and time required for three feeds a day so the pump could be a consideration for me and my family in the future.

      Mick.

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        #18
        Onwards & upwards Dina!

        There are various different feeds - higher calorie, protein, fibre, fat and soya based - so I'm sure you and the dietitian will find a suitable one, though I hope you won't have many more challenging days....

        Might the dietitian let you cut right back on the amount you take and at a slow rate, eg 100mls @25ml/h, and gradually increase both over a few days? You can still have Fortisips during this period to get your calories.

        It took me a full week, or more, to work up to my system getting used to a full feed @125ml/h.

        Best wishes to you and a big hug!

        Love Ellie.
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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          #19
          Originally posted by Ellie View Post
          Might the dietitian let you cut right back on the amount you take and at a slow rate, eg 100mls @25ml/h, and gradually increase both over a few days? You can still have Fortisips during this period to get your calories.
          Best wishes to you and a big hug!
          Love Ellie.
          I was having Fortisips during the day via the tube but was feeling full and uncomfortable all day. I had completely lost my appetite and didn't want to drink. We were trying to stimulate the appetite and the drinking but the situation was made worse by having the Fortisips.

          I'm sure it will get sorted soon, although I would rather not have any more of the "challenging" days!
          Dina

          Trying to keep positive, but not always managing.

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            #20
            At least you've help 24/7 in there Dina - although it'd be lovely not to need so much help, wouldn't it

            Better to get your feeding regimen stabilised before moving on.

            Love Ellie.
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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              #21
              Originally posted by Ellie View Post
              At least you've help 24/7 in there Dina - although it'd be lovely not to need so much help, wouldn't it

              Love Ellie.
              Amen to that, Ellie!

              I had a meeting with a nurse from the CCG in my home area, about the CHC application. My partner, son and I all felt it went well. There will be an MDT meeting with the CHC nurse and me next Thursday, at the end of which she should be able to tell me if I am eligible. You never know, I may get home this side of Christmas!
              Dina

              Trying to keep positive, but not always managing.

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                #22
                Good luck Dina. 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.

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                  #23
                  Good luck with it all Dina, My Uncle was in hospital one to one care with dementia and they got his through for a home for him.. It does take a while

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                    #24
                    Originally posted by shrew View Post
                    Good luck with it all Dina, My Uncle was in hospital one to one care with dementia and they got his through for a home for him.. It does take a while
                    Thanks, Shrew. Mine was a fast-track application. The funding was not approved (but not rejected) because it was felt that, due to complexity of my needs, it would take longer than 48 hours to set up an appropriate care package. If approved, it should be considerably quicker than a standard application.

                    I am having to learn to be a patient patient, but it doesn't come naturally to me! Ha ha.
                    Dina

                    Trying to keep positive, but not always managing.

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                      #25
                      Thanks, Lynne.
                      Dina

                      Trying to keep positive, but not always managing.

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