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    #46
    That's pretty poor form, Denise - left on your own to figure out what to put through Stephen's feeding tube, and in what consistency 😫😫

    If you are going to blitz up regular food, it has to be really smooth and thin, and well flushed through afterwards with water. I'm sorry you've been left to your own devices. I had a quick look at Nutricia's .pt website, which says their products are available to buy in pharmacies, so I suggest you buy a few bottles of Fortimel to have on hand for those 'just in case' situations (mind you, I've no idea how much they cost)

    I don't suppose S got details of what tube was fitted - maybe in his discharge letter (she says hopefully 😏) or sometimes it's stamped on the actual tube itself. I'm looking for an Fr or Ch size, which denotes the width of the tube, that will give an idea of what can go through it.

    Best of luck to you both.

    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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      #47
      Ellie does placed peg cook 24 fr mean anything to you.
      I'm trying to translate it 🤔

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        #48
        Perfect Denise. Cook is the tube brand/manufacturer and the 24Fr means the actual tube diameter is wider than many other tubes, at 5.5mm. This is good if you plan to blitz up food but it still needs to be very smooth and quite thin.
        ​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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          #49
          Looks like in the region of 12 euros for 4. 😐

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            #50
            Yes, €12 per day will soon deplete the coffers 😯 probably similar price on Amazon and eBay?
            ​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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              #51
              I'm sending 24 high fibre chocolate tomorrow x

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                #52
                Nice one mate 😘
                ​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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                  #53
                  He's my hero 😚

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                    #54
                    It's on the way and you should have it in a week. I didn't want to give my arm and leg for anything quicker sorry. x

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                      #55
                      denise Just a thought - if Stephen was pump fed, would that and the feed be supplied? Unlike the Ensures and Fortisips/Fortimel, pump feed can't be taken orally, so might be classed differently. Might be worth asking his GP or maybe it's a good time to join Apela?

                      You need local support for the tube and nutrition.

                      Big hug to you, especially needed when your son and GF go, I suspect.
                      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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                        #56
                        What is apela?
                        I see what you mean. Would have thought the doctor would have said once he becomes dependent on the peg for food. I have a lovely local pharmacy who are helpful. I will have a word with them.
                        thanks Ellie xxxx

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                          #57
                          Matthew it could come by donkey. You are so kind and wonderful.
                          I shall be heartbroken when my son and his girlfriend leave. 😭

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                            #58
                            Sorry Denise, Apela is the Portugese association for ALS, or ELA as it is in Portugese. They have some tie in with Nestle Nutrition, it seems.

                            Hopefully the pharmacy will have ideas for you.
                            ​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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