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Peg feed advice please

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    #31
    Ellie she never mentioned calogen. I doubt she will as she works for nutricia. Im seeing my mnd nurse tomorrow I'll chat to her x

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      #32
      Hi Pink,

      Calogen is made by Nutricia - it's good for putting on calories fast and boosting energy as it's very high in fat.

      Hope your Nurse suggests something good, you need to put on weight!

      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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        #33
        Hi Pink,

        I hope all is going well with your increased calorie intake, and that your MND nurse was helpful when she visited you today.

        Love and best wishes to you and your family,
        Kayleigh x

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          #34
          Ive started the increased calories in my feed. Ive neen waking feeling a bit nauseous. Also feel a bit nauseous after putting the nutricia milk shake through the rig as well. Ive started apreadi g the drink throughout the day. That helps a little. Anyone else have this problem.
          It's making eating very hard!
          ?

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            #35
            Hi pink,
            Sorry I am not much help as I haven't got a peg or rig at the moment, not yet. I am sure someone will come along with good advice shortly.
            Take care
            Sheila

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              #36
              Hi Pink,

              I daresay it'll take time for your system to get used to those extra calories after such a long time without.

              Has the pump rate been increased I wonder?

              Also, how fast is the milkshake being put through the feeding tube? If it's put through quickly, given you are not used to them, it would make you feel nauseous.

              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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                #37
                hi Pink sorry ur feeling sickly. I’m sure someone will be along soon with advice. Although Mick has a rig hes just on 50ml water. Hope ur feeling better soon x

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                  #38
                  The pump rate is slowly increasing to the rate i was on. When having the drink it gets poured in and let gravity do the work which is very slow. I also have started having the drink spread through the day. (3portions)

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                    #39
                    Hopefully it's just your body adjusting to the extra feed Pink, as well as the new ingredients in the milkshake (especially if you're unused to milk products)

                    If it persists, you should tell the Dietitian.

                    Best of luck.

                    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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                      #40
                      Sarah and all, I had peg fitted three years ago .but can still eat well so long as food mashed. Not having Peg food yet having read through the posts I have learnt a lot. So thanks all for comments.
                      Best wishes John

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                        #41
                        Hi Jay Tee. What made you have a PEG fitted 3 years ago? We're you able to eat normally then? I can eat most things but slower than in the past. Lynne
                        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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                          #42
                          hi
                          Mick had his rig done in january. He eats and drinks normally at the moment. I suppose its ready then for when you need it. I suppose things can change quickly

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                            #43
                            Thanks Shrew. I'm going to speak with my consultant about when she would advise I consider it, now or later. I next see her in May. Lynne
                            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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                              #44
                              As with most aspects of MND, progression is unpredictable. I had my PEG fitted 12 years ago on the basis of "sooner rather than later". Four years ago a new one was fitted because no one knew if it might have deteriorated. I still can eat a soft food diet and only use the tube for meds. I flush it through with water and rotate it daily which has become routine and no more onerous than brushing my teeth. I hope this helps those of you who are yet to make the decision.

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                                #45
                                Hi Lynne,

                                When and if to get a feeding tube can be a bit confusing to say the least. A lot has to do with what type of MND one has.

                                Often those with Bulbar onset ALS need a feeding tube sooner than a person with limb onset ALS. As people point out, a tube is an insurance policy and it is way easier to recover from the procedure when relatively healthy and strong.

                                People with PLS or UMN Dominant ALS have slower progression and, as Miranda pointed out, may have a tube for a long time without needing to use it. Also not everyone with ALS loses the ability to swallow.

                                It's a bit of a red flag for needing one though if anyone is struggling to swallow safely, coughs when eating or drinking, has sustained weight loss or has marked declining respiratory function.

                                Having said all that, it's up to the individual whether or not to get a feeding tube - some people don't want any interventions.

                                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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