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Peg feed advice please

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    #16
    Maybe we can share some ideas? I like salmon with mayo and spring onions chopped up small , I crave a bit of flavour ,chicken sliced never cubed , mixed with mayo and pesto, I only eat a little bit but it satisfies my tastebuds!

    Sarah x

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      #17
      Sarah my feed is 750 calories overnight. I try to eat through the day even though I don't have an appetite. I reckon somewhere in the region of 800 calories.

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        #18
        I have lost weight since I was diagnosed in January. Anxiety and stress about it all I think. Dietician is coming out on Monday. So I expect I will get lots of advice. I weigh 7 stone.

        Take care all
        Sheila

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          #19
          try adding extra virgin olive oil and sunflower oil to savoury things and coconut oil to sweet things they are both high in fat also appear to be very good for the skin

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            #20
            Sarah, I know exactly what you mean about wanting tasty meals!

            Because I only eat lunch - and I know I am lucky to be able to - it has to be nice! Everything has to be chopped up small and I can't manage dry food. My tongue doesn't work so I can't move food around my mouth, but my swallow is pretty good (relatively speaking)

            Some of my usuals are: tuna mixed with mayo, olives, peppers, tomatoes (or whatever is in the fridge)

            Hard boiled eggs mixed with mayo, grated cheese, spring onion, tomatoes, crumbled Carr's crispbreads (they are soft and not crumby)

            Stir fry veg with noodles and packet sauce.

            Omelettes or fritatas packed with anything and everything.

            Halloumi in semolina, griddled, with salad, red onion, olives, coleslaw.

            Pasta (I break up spaghetti before it's cooked) with mushrooms, tomatoes/peppers, broccoli in creme fraiche.

            And garlic in whatever I can.

            I don't eat meat and only recently started eating tuna.

            My carers cook for me. My target intake is 1800 cals per day.

            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
              Ellie your 1800calories, does that include your feed? X

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                #22
                Yes, 1800 cals is my total for each day.

                I am 51kg now, so if you're lighter or heavier, your calorie requirement will be different. The Dietitian set that figure and also said I should have 1800mls of fluids per day.

                I either get 765 or 1530 cals from my feed, depending on whether I take 500 or 1000 mls.

                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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                  #23
                  Im 43kg. So i will be different. Ive never been told how much i should have. Im going to contact the nutricia dietician next week.

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                    #24
                    You are underweight Pink, so you will may have a higher target initially until you gain weight.

                    It's awful to hear you were never given advice on how many calories you should have daily hopefully the Nutricia Dietitian will give you an appropriate diet plan.

                    Nutricia do a high fat drink called Calogen which can go through the feeding tube in addition to the Nutrison pump feed. I had it for a while at the start as I was deemed to be light at diagnosis - I was 47kg, which was my normal weight for years - and the Dietitan wanted to fatten me up like a Christmas turkey, as low weight is not ideal in MND. It's a hungry disease!

                    If you are able, please be firm with the Dietitian if you feel like you're not being taken seriously. The good thing is that it's a Nutricia Dietitian, so it's in their interest to recommend extra feeds!

                    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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                      #25
                      My daughter just had peg fitted, going to have feed overnight then try to eat what she can through the day, we are all a bit nervous about it they are coming out to instruct us on the pump on Monday, do people find it easy to deal with re showering and lifting etc?

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                        #26
                        Hi Jaxx,

                        I don't know if you mean showering & lifting with a feeding tube in general or when pump feeding, so I'll answer both.

                        Your daughter should have been given instructions on immediate aftercare of the feeding tube and the PEG site re cleaning and turning the tube day 2-14 post procedure (at least I hope she was!!!)

                        Once the initial healing period regime is over, i.e. from day 14, it's back to normal really with showering and lifting. (It's important to dry the site well)

                        The tube is tucked up into her T-shirt, but some people tape it to their tummy to lessen the chance of the tube being pulled by mistake.

                        When the pump is attached, it's best to stop the pump and detach the giving set from the tube for a few mins for lifting, then reattach giving set and restart pump - this is quick and very straightforward.

                        The pump wouldn't be brought into the shower, feeding would have to be stopped for showering.

                        Jaxx, her eldest girl might like to be part of setting up the pump feed, my kids did and it demystified the enteral feeding for them as well as them "helping mummy".

                        Initially just a small amount of feed will be given and that should be during the day.

                        Best wishes to you all.

                        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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                          #27
                          Had the dietician round. Weight dropped to 40 kilos now !! Have a new plan. Increasing my night feed from 750 calories to 1000 calories. Plus adding 300 calories by having a nutricia drink via rig. Hopefully that will put some weight on and get a bit more energy!!

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                            #28
                            Hi Pink,

                            I'm sorry your weight loss is continuing unabated

                            TBH, I think you need more than an extra 550 calories per day to start regaining weight at a sustainable level.

                            How many calories will you get daily now? I'd have thought you would also have been prescribed 3 x 30mls of Calogen daily - it's high fat, mostly good fats, and it great for boosting energy and weight.

                            Did the Dietitian estimate how long it'd take to get you up to a desired weight?

                            I hope you start putting on vital weight very quickly.

                            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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                              #29
                              Good luck managing your weight Pink.' I'm watching this discussion for the future. I'm not in that situation yet. My weight has gone up since diagnosis from my preferred 64kg to 78kg. I don't like this extra weight. 67/68kg would be ok. Take care Pink,' love 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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                                #30
                                Thank you Ellie, she has an overnight feed of around 750 mls building it up eventually to 1300mls and anything she manages to eat during the day is a bonus, I’m glad we can put water via the tube as I was so worried because she was drinking next to nothing, we have stopped lifting her now and are using the hoist as it causes too much pain in her shoulders, downstairs wetroom almost complete so no more lifting on and off stairlift.

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