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Dietitian in the house!

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    Dietitian in the house!

    Hi everyone,

    The reason for my post is that I am a registered dietitian, and work with people with PEGs / RIGs every day. I have also worked with people with MND before (and through a cruel twist of fate of course my Dad then got MND and needed a PEG).

    You’re all so helpful to one another and on the ball, but I thought I would reach out if anyone had any dietitian-related questions. Of course, I can’t make a tailored assessment to you or answer specifics but I hopefully can answer any general questions. I am currently in Australia but also worked in the UK for 5 years at a number of tertiary hospitals in London and Canterbury x

    #2
    Thanks danikacarty sure will you be useful source of information. Many thanks x
    Last edited by Gordan1111; 2 September 2021, 12:07.

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      #3
      That's very kind of you Danika, thank you! xx
      ​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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        #4
        HI

        Thanks danikacarty

        Just thinking about this and how to discuss with husband. Eating okay with some coughing after.

        Weak neck muscles, which tilts his chin down (has neck brace, but not fond of it)

        My question (I was going to do an internet search)

        What is the difference between PEG (have some experience) and RIG, thanks?

        Kind regards

        Donna

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          #5
          DeeH

          PEG = percutaneous endoscopic gastrostomy
          RIG = radiologically inserted gastrostomy

          The main difference is the method of insertion - PEG they send a scope down the oesophagus to place the tube, and RIG they use an x-ray to guide insertion of the tube into the stomach.

          PEG requires ~30 mins of sedation and lying flat during this time. I forget the exact cut offs, but if your respiratory function is too low they cannot lie you flat in order to complete a PEG, therefore RIG is a more appropriate option.

          They are both tubes into the the stomach, and no need for difference in feeding regime (tailored to the patient). In terms of what type of tube they insert (balloon vs external traction), that’s up to what they stock at your NHS trust.

          Hope this helps!

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            #6
            DeeH Just to add, Donna, that, if necessary, NIV can be worn during the RIG procedure. xx
            ​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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              #7
              Thanks
              danikacarty

              and

              Ellie

              All good to know

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                #8
                Thanks Daniela. I’ve wondered what the difference of a RIG and PEG was for ages. Now that I read your post and the replies to you I’m now clued up. You’ll be very helpful to all of us. Love Lynne x
                ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                I'm staying positive and taking each day as it comes.

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                  #9
                  Thank you for offering your expertise danikacarty . Its really kind of you xx

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                    #10
                    Lynne K
                    Hi Lynne, I went in hospital to have PEG procedure but when the surgeon reached my stomach he came across polyps so abandoned the procedure.After an MRI I was able to have the tube inserted by RIG procedure.
                    Best wishes
                    Mary

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                      #11
                      I have been seen by various dieticians and they are all the same. Put on weight. Well I get to 10ish Stone and there I stay. Nothing I take makes any difference. Feed cannot rebuild muscles. 😉🤗😁😍xx
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                        #12
                        Mary, thanks for that information. I’m glad that it’s done and dusted. Love Lynne x
                        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                        I'm staying positive and taking each day as it comes.

                        Comment


                          #13
                          Sounds good Mathew x
                          ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                          I'm staying positive and taking each day as it comes.

                          Comment


                            #14
                            matthew55 yea, that’s our MO as dietitians I’m afraid. But you’re right, what muscle needs is adequate protein + stimulus (resistance / strength training) to rebuild so impossible for MND folk x

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                              #15
                              I wasn't having a pop as I know it's the job not the individual. 👍😀🤗💗xx
                              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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