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Thread: My dad

  1. #141
    mags55
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    Thanks Elaine
    I will ask my dietician about them, I think with added fruit would be better for me
    Mags x

  2. #142
    Forum Member Katrina36's Avatar
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    I've had a phone call off my mum saying that dad isn't wanting to use his peg as it's making him too full. And he doesn't want to use if for medicines either and wants to persevere taking the tablets orally. So now I will have to go back to go and have them changed from liquid to tablet form again,.. Going to go see him tomorrow at home and see what's happened and why the sudden change since he left the hospital... Anyone experienced the feeling full feeling?.. I think mum might not be taking the amount he's drinking off the volume putting down peg water wise, will have to check with her.. Katrina x

  3. #143
    Dude
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    That'S great news Kat . I believe swallowing anything as long as you can is good for the swallowing mechanism. He has the peg for the future. Win win. Changing meds is not coal mining lol. Dude xx

  4. #144
    Forum Member Ellie's Avatar
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    Sorry to hear that Kat, especially as his swallow isn't great.

    Sounds as if he's getting too much feed, too fast, too soon. It takes time to build up tolerance to any food through the tube - it isn't like taking it orally.

    I'd continue with meds & water through the tube and give less food, more slowly and maybe, more often, if his dietitian says it's ok.

    If food or liquids go down the wrong way, he'll be in trouble. He got the tube in the first place because of choking episodes!!

    Ellie x
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  5. #145
    Forum Member Ellie's Avatar
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    Dude,

    I know you've still got a fairly good swallow but for some people, their swallowing is compromised and a choking episode could result in aspiration pneumonia. And that's to be avoided at all cost!
    So, please be aware of that.

    Ellie x.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  6. #146
    Steve
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    Well said Ellie, the last thing he needs is a hospital stay. Slowly and often.

    Dude, thinking cap on.

  7. #147
    Dude
    Guest
    Ellie I do appreccaite your point but we do not exactly know bad/good swallow is. Dieticians are not God, if Dad wants to try oral then who is anyone to say he shouldn't. Maybe he & I have the same swallow. I'm giving my opinion. Dude

  8. #148
    Steve
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    It's so high risk though mate. It literally could kill him.

  9. #149
    Forum Member Katrina36's Avatar
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    Hi Ellie,, I think your probably right he could do with the mls going in slowly and buildings them up to bolus feeds, I'm not sure why they suggested it this way round, im also wondering if mum is maybe putting it in too fast with the syringe as I know my son after years cannot tolerate it being pushed in too fast with syringe, it makes him feel sick.

    I'm going up to mum and dads tomorrow as dietician in coming. And I want to see how fast mum is putting it in as dad says mums to hashy bashy lol.

    I think of dad has more choking episodes he might remember why he got it put in place in the first place

    Mum said he's been getting upset with it. So maybe he just needs time to come to terms with the fact he now has peg. I would imagine anyone would feel like that until they got used to it.

    Katrina x

  10. #150
    Forum Member Katrina36's Avatar
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    Hi Dude, I know your very pro drinking ensures, but anything dad drinks literally comes pouring back out the way, it's not the dietician hats just saying his swallow is not as good as it once was we watch him struggle on a daily basis trying and trying to drink. I know if dad could do it that way he would as he is very stubborn lol. But he just can't do it. It's either pouring back out or he's choking. .. Kat x

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