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Thread: Having a peg fitted

  1. #1
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    Having a peg fitted

    My husband has bulbar motor neuron and is now finding he has to chew his food much more and sometimes he chokes. He has thick and easy in all his drinks. He is now thinking of having a peg fitted but would like to know if he could still have a cup of tea and eat some solids or does everything has to be fed through the peg. Also at the moment he generates a lot of mucus in his throat especially after eating which makes his voice gurgle would he generate as much mucus if he had the peg fitted. He has almost lost his voice and I am having a job to understand him. I would be grateful for any advice on the peg.

    Thanks Bonnylass

  2. #2
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    I've had a PEG for almost seven years and never used it for feeding. Over the years I have learned to avoid most things that make me choke and now mainly eat a soft food diet with lots of cream or sauces or gravy to help it slide down easily. In some people dairy foods make saliva thicker but it seems, like most aspects of MND , we are all different. During a recent spell in hospital, all my medication went via the PEG and now I am home I am continuing to use it for meds but eating and dRInking 'normally'!!

  3. #3
    Forum Member Steve's Avatar
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    Hi Bonnylass, this was discussed a week or so ago on another thread. It might be useful

    http://forum.mndassociation.org/show...g-Rig-question

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    Thanks Steve and Miranda for your replies I looked on the link you sent Steve and it was very helpful.

    Bonnylass

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    Hi Bonnylass, my advice is always make sure your husband gets plenty of nutrition, that must be your priority now....if he loses too much weight it will be very bad, I'm sorry to be so stark but Pete and Miranda and others are experts on this and they are still around to keep posting important advice for fellow bulbars. So full fat everything and high calories...it will take longer to eat, but you will be able to do a mixture of peg and mouth and that will be good. My sister used duocal powder which is double the calories and no taste, she also made fresh food and pureed it to put through the peg. Keeping weight on means keeping healthier so do everything you can (peg included) to ensure that.
    There was also a post about a cough mixture that was supposed to make it easier to swallow if the cough mixture was taken regularly, I can't remember the name though...can anyone else?
    sent with love,
    XXXXXXXXXXXXXXXXDebbieXXXXXXXXO

  6. #6
    Forum Member gerald's Avatar
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    Hi bonnylass. The peg always raises different viewpoints from our point of view christine. Has thrived on its use. In the ist instance just used it to give hydration and medication, she is now on fortisips she hasnt lost weight and aactually looks well.

    Hope it works for yoy both

    Best wishes gerald

  7. #7
    Forum Member john's Avatar
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    Berdbrain,
    The cough mixture is Delsym which contains dextramorphan . Pete took it for a while but I do not know if he still does. It is available over the counter I think.

    John

  8. #8
    Forum Member pete's Avatar
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    Evening John,

    Hope your fit and well, yes I still take the syrup not every day it now tends to be a week on and three weeks off ,but it must vary from person to person as everything else seems to, tried it every day, then after the first two weeks reduced it ,, as and when I had swallowing issues , increased the dose, now seems stable and not wishing to push my luck, but my swallow is near normal ,though can't drink liquids from a glass has to be via straws , and it's Robitusin dry cough it's labelled clearly. And from boots.
    All I need is a miracle

  9. #9
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    Thanks guys, I hope that people try Robitusin dry cough......it's not too expensive and as with all these things it's trial and error, what works for some won't for others.....God only knows why.
    So glad that Christine is doing well with the PEG and keeping the weight on....and your point about hydration is so important especially with the weather at the moment, we all need litres of water and if swallowing is difficult this could prove a terrible problem.
    XXXXXXXXXXXXXDebbieXXXXOO

  10. #10
    Forum Member pete's Avatar
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    Quote Originally Posted by berdbrain View Post
    Thanks guys, I hope that people try Robitusin dry cough......it's not too expensive and as with all these things it's trial and error, what works for some won't for others.....God only knows why.
    So glad that Christine is doing well with the PEG and keeping the weight on....and your point about hydration is so important especially with the weather at the moment, we all need litres of water and if swallowing is difficult this could prove a terrible problem.
    XXXXXXXXXXXXXDebbieXXXXOO
    Hi Debbie,
    Well to be honest at around four quid ,it isn't going to break the bank or do folks any harm ,if they see no improvement then it's not a lot of money involved, for me it's been worth it, just hope others see benefit from trying ,as I say it's no miracle drug but if it helps ,then worth it

    Pete
    XXXXXXXXXXXXXXXXXXXXXXXX
    All I need is a miracle

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