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Thread: PEG feeding problems

  1. #1
    Forum Member Bess's Avatar
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    Unhappy PEG feeding problems

    Hello everyone, I hope you can help. My mum has MND, diagnosed last August. She had a PEG fitted in February as she is no longer able to eat or drink. She is fed 200mls of formula five times a day but ever since she got home from the hospital has suffered terribly with diarrhoea. Not easy when your mobility is restricted and you can't rush to the loo.
    She is currently fed manually with a syringe into the PEG. Has anyone had experience of the feeding overnight via the machine. She has tried a variety of different food formulas with no success and has only put on about a pound since the PEG was fitted. We are desperate to sort this out and the dietician seems to operate on a very slow schedule and probably doesn't know much about MND. Feeling very frustrated, Bess

  2. #2
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    Bess, just brought my husband home from hospital after PEG fitting. Think you should contact MND Connect they will be able to advise you. I know of children, not MND, who are fed overnight and they are thriving. Think you need urgent intervention for your Mum she has put up with this for long enough.
    Hope you get the help you need soon. Let us know how you get on.

    Magic

  3. #3
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    Hi Bess and Magic, my sister had great difficulty coping with the feed into the peg mostly because her tummy was too sensitive to take the feeds and it did give her diarrhoea. If you look at my past posts the thing that helpd my sister maintain her weight (although she had lost so much weight she was fighting a losing battle) was to make her own meals or use the ready made ones from Marks or Waitrose and purree them and sieve them and add stock, milk or cream as appropriate to put through the peg. This meant that she was back in control, and she didn't lose any more weight, she maintained her weight...but as I said this was after months of battling unsuccessfully with the feeds. The local nutritionist was not happy, and I met with her and my sister and even though I said that Rachel Marsden at John Radcliffe said it was a good idea and also when I rang MND Connect they said fine as long as you ensure the highest standards of cleanliness because of the risk of infection. For lots of people the feeds are great and they are a good way of ensuring regular feeding but if your tummy is too sensitive you have to think of alternatives.
    Also if you are still considering the feeds then you need to adjust the quantity and the type...there is some feed called duocal it comes in feed, liquid and also in powder. This is the gentlest on your tummy apparently but again not for my sister. MND Connect told me about the duocal powder and when she got that we added it to all her food, just sprinkled a couple of tablespoons and it boosted her calorific intake. Again it was MND Connect that told me this...the local dietician only told us about the duocal feeds....so it has to be an MND specialist. For the feeds isn't there an Abbotts nurse that you phone to ask about adjusting the feed speed etc.?
    Anyway do look up my past posts, because lots of lovely people replied to me when I was desperately looking for help because the weight loss is so terrible...and I still keep saying stop the weight loss before it gets to be too much of a problem. You don't have time to wait for a dietician who isn't an MND expert.
    Hope this will help a bit, with love
    XXXXXXXXXDebbieXXXX

  4. #4
    Forum Member Ellie's Avatar
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    Hi Bess,
    I've had the PEG for 5 years now and always use the machine pump as I can regulate how fast the formula is delivered. I know that even if I get a syringe of water too quickly, it can upset my tummy.
    I have my feed during the day simply because it suits me better. I would recommend using the pump, both for your and your mum's benefit.
    The dietician worked with me to calculate my calorific requirements and I started with a slow rate of 70 mls/h and have found 120 mls/h to suit me personally. I have a Flocare Infinity pump, which is easy to use and reliable.
    Ellie.

  5. #5
    Forum Member Bess's Avatar
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    Thank you all very much. Your replies are so helpful. I haven't posted anything on the forum for a while and am always blown away by how lovely and helpful everyone is. the dietician is visiting tomorrow morning so now I feel a bit more prepared with some suggestions and information on how to make things better for mum. She is, understandably, very down at the moment. Thanks again for your help. Love and best wishes to you all, Bess xxx

  6. #6
    Hello Bess. I have been peg feeding for six and a half years overnight. I have 1000mls at 125mls an hour. For the first month or so I would sometimes vomit in the morning, luckily never overnight. Now my stomach is accustomed to it it is no problem at all. Just a way of life. But as other posters have said , each person is different. Good luck.

  7. #7
    Forum Member Rory's Avatar
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    Hi all

    I use a RIG and auto machine for feeding overnight. As stated above my body has now got used to it and it leaves the day free - for more snoozing ! 100 mls an hour - so 10 hours in all. You can stop and start to get used to the volume.

    Rory
    New Year's resolution -not to get MND again !

  8. #8
    Forum Member Ellie's Avatar
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    Hi Rory,
    Doesn't it interfere with your clubbing? I found that my fellow clubbers kept dancing on the giving set tubing. Any tips ?
    Ellie.

  9. #9
    Forum Member Rory's Avatar
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    Elle

    I only do the slow dances so my partner holds the machine and gubbins - that keeps my hands free!

    Rory
    New Year's resolution -not to get MND again !

  10. #10
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    Bess,

    My wife suffers from ALS and has been using a PEG feeding and rehydration system for a year now. She is fed and watered by the 'Kangaroo Joey' pump both day and night. We found that initially she had diarrhoa, so reduced the dose to 70 ml per hour at night and increased it during the day to 90 ml per hour. With this setting she is now comfortable. The dietician wants her to have 1500ml per 24 hours, to maintain her weight.
    so the slow ffed rate means that she is on the pump for about 18 hours per day which is a bit of a nuisance. This particular pump can be fitted into a small knapsack, but then water has to be administered by syringe. I hope that this is helpful. Flametrap.

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