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    Oral drinking options?

    Hi…. I have followed you all for a long time and many thanks for all the tips we have picked up! My husband was diagnosed with ALS 5 years ago. He has been able to take drink and nutrition down a silicon straw for the last 6 months after swallowing/phlegm issues rose their ugly head! Got to grips with that for a while but is now having to take his nutrition and water via his PEG as suddenly unable to get into a correct position to use the straw and a lack of ‘suck’ power. Doing ok on the whole but does anyone have any ideas for ways of taking some fluid orally? Currently using syringe just to put a bit of water/fluid in his mouth but he likes to be in control of things himself as much as possible! Sucking on lozenges etc isn’t an option as he couldn’t control where it stays…. Thanks in advance. You are all so helpful xxx

    #2
    Is your husband thirsty Angela, or is he wanting to take fluid orally for psychological reasons, or maybe it's a bit of both?

    If he's getting his full water quota through the tube, plus extra in hot weather, he shouldn't feel thirsty per se, but his mouth itself might feel dry in which case, foam topped swabs soaked in water might help.

    Is he coping with water being syringed into his mouth with his swallowing issues: no risk of aspiration? xx
    ​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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      #3
      Thanks Ellie. I think he’s well hydrated through his PEG…. Am forever calculating what’s going in!!! I think as you say it’s a bit of both. I’m not sure he feels ready to give up on ‘drinking’ totally if at all possible. Am only syringing a bit of water in at a time which he is either managing or spitting out…..
      He is taking most of his medication down his PEG as well now. All apart from the one Citalopram tablet which we crush up and he somehow still manages to take orally in a bit of liquid. We tried the Citalopram drops but after a couple of days he was not in a good place at all so reverted to the tablet. They taste utterly vile! Not sure how much longer he will be able to swallow it for though…. Does anyone take the crushed Citalopram tablets down their feeding tube rather than the drops? He’s so good and calm in the whole I don’t want to risk them not working and him feeling dreadful. Thanks in advance x

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        #4
        Have ordered some sponge topped swabs… thanks 😊

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          #5
          Originally posted by AngelaR View Post
          ... Am only syringing a bit of water in at a time which he is either managing or spitting out…..
          That's what kinda worries me tbh - obvs I've no idea of his swallowing ability but, in my own case, I can't cope with syringing water into my mouth, even in tiny amounts because the water is directed into my mouth and, because my tongue can't move much, I have zero control over the water in my mouth. I do better with a tiny piece of ice on my tongue - again, that suits my ability, I am not suggesting that your husband should try it.


          Originally posted by AngelaR View Post
          ... Citalopram tablet which we crush up and he somehow still manages to take orally in a bit of liquid.
          There's no difference in taking a crushed tablet orally or through a feeding tube, the question is, can the tablet be crushed?

          Your Pharmacist will tell you if a particular tablet can be crushed but, regarding Citalopram, there's nothing to say that it can't be crushed and you've been doing it anyway and it obviously works 😏

          I will say though, when putting it through his tube, make sure it's well dissolved as it's a film coated tablet, and flush well after. xx

          ​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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            #6
            Very many thanks for your advise and suggestions Ellie x

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              #7
              Hi Angela, my husband has all his medication via the PEG. Some is in liquid form but quite a few are tablets. Citalopram crushes really easily and isn’t a problem. The worst medication is melatonin. He has 4 tablets at night and they are a real pain to crush. Also they wreck the syringe in no time at all. We only get 3 syringes a week so have to wash them. And as he has 5 different meds at night, it’s a real pain!

              As it’s bulbar onset he hasn’t been able to suck for a very long time but still likes to have sips of fluids, both to keep his mouth moistened, but also for flavour. Until now we have managed with a long spouted cup. Mostly this works, but sometimes he doesn’t seem able to control his lower jaw. His mouth opens too far and the liquid just pours back out. It’s especially difficult at night when I clean his teeth. Any suggestions about rinsing afterwards would be much appreciated!

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                #8

                Originally posted by Polly View Post
                The worst medication is melatonin. He has 4 tablets at night and they are a real pain to crush.
                Is there a reason why he can't use liquid melatonin Polly?

                Presumably the tablets aren't the prolonged release type 😬 We find that a pestle and mortar works best for pulverising tabs and letting them stand in warm water for a while helps those stubborn coatings break down further.


                Originally posted by Polly View Post
                We only get 3 syringes a week so have to wash them.
                Syringes last longer if not washed out with hot water and/or washing up liquid. Rinsing with cold to tepid water is perfectly fine.

                Originally posted by Polly View Post
                Any suggestions about rinsing afterwards would be much appreciated!
                Would he do any better taking small sips of lukewarm water whilst leaning slightly forward over the sink/basin, or perhaps a wet flannel or foam swab? And are you using just a smear of toothpaste? xx


                ​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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                  #9
                  Oh Ellie, you can guess why! It costs more! We had a review of all his medication quite recently and that’s what I was told. And yes, they are prolonged release but the pharmacist assured me it wasn’t a problem.

                  I must admit I wash the syringes with hot, soapy water. I guess I was thinking I needed to remove all the residue, particularly with baclofen, as it’s so sticky. I’ll try your suggestion.

                  I use a smear of toothpaste on a dry brush. My husband used to wet the brush first when able to clean his own teeth - not a good idea! And Mr Difficult likes copious amounts of cold water! But I will experiment with different ways of rinsing.

                  As a carer I am so frustrated that we are thrown in the deep end, with little or no advice about how to do things. That’s why this forum is so important and I’m so grateful for all the tips! xx

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                    #10
                    Originally posted by Polly View Post
                    ... And yes, they are prolonged release but the pharmacist assured me it wasn’t a problem.
                    There is a 'do not crush' on the tablets but that's probably by the by to him at this stage. I will say though that if he's not getting the benefit of prolonged release of melatonin, perhaps the standard tablets, in the same dose, will crush better as PR film coatings are tough by design.

                    We switched back to Baclofen tablets after one-too-many sticky disasters with that liquid 😱😱 I find the tablets easier on my stomach too. xx
                    ​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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                      #11
                      Originally posted by Polly View Post
                      As a carer I am so frustrated that we are thrown in the deep end, with little or no advice about how to do things. That’s why this forum is so important and I’m so grateful for all the tips! xx
                      I’m the one with MND, not a carer, but I feel your frustration. I’m in Canada and our ALS Society doesn’t even have a forum. I was muddling about with no help until I found this group. I’ve gotten more useful advice hanging around here than I’ve gotten from anyone on my care team.

                      Diagnosed December 2020 with lower limb onset ALS, now involving hands and arms.

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                        #12
                        100% agree with Maria.

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                          #13
                          Maria C this forum IS my MDT and without you all I'd be very lost and confused.
                          Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                          Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                          Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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                            #14
                            Ellie
                            Syringes last longer if not washed out with hot water and/or washing up liquid. Rinsing with cold to tepid water is perfectly fine.

                            How do you mean please? What decides if a syringe is finished? Thanks. (Yes I always imagined hot water and a bottle brush and washing up liquid must be the best). X
                            Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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                              #15
                              Heather R The syringes have a type of lubricant film for easy gliding of the plunger (straight face, Elsie, keep a straight face 😉), which washing-up liquid and hot water breaks down. The rubber bit doesn't particularly like it either.

                              We change syringes when they get stiff to push. xx
                              ​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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