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    Botox or Not?

    Hubby has been offered Botox injections to reduce production of saliva but told that will mean no oral food or drink at all. He only has minimal drinks now.

    I notice that others on here have another drug (something Bromide) can minimal eating and drinking still take place with that drug? We will be asking the nurse, but wonder if the "experts" on here know?

    Thanks
    Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicates with eye gaze.

    Respiratory and blood gases still within normal range.

    No speech but sense of humour still fully intact.

    #2
    Originally posted by MMG View Post
    Hubby has been offered Botox injections to reduce production of saliva but told that will mean no oral food or drink at all. He only has minimal drinks now.
    Not neccessarily - Botox may affect muscles near the salivary glands into which it's injected, thereby weakening them further, although this is not a given.

    Originally posted by MMG View Post
    I notice that others on here have another drug (something Bromide) can minimal eating and drinking still take place with that drug?
    Glycopyronnium bromide or hyoscine hydrobromide: neither drug has an effect on the mechanism of swallowing.

    I have taken glyco for over a decade and can still eat and drink somewhat - the drug hasn't affected my swallow at all, just effectively reduced the production of saliva. đź‘Ťđź‘Ť 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
      I take glyco as well. What quantity do you take Ellie? I take 0.25 but it doesn’t stop me dribbling. As i have Bulbar Palsy, maybe that’s the reason?
      Bulbar ALS diagnosed September 2021, no speech, PEG fed, using ipad with Predictable to communicate, taking each day as it comes

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        #4
        Hakuna I take 2mg (same as 10ml) of glyco, twice per day. 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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          #5
          MMG Hubby has been offered Botox injections to reduce production of saliva but told that will mean no oral food or drink at all. He only has minimal drinks now.

          Don’t think Botox automatically results in no oral food or drink if that’s what you mean. There are risks if injection done badly which is why you need to be sure you go to recognised/recommended practitioner. King’s palliative consultant has persuaded me to think about it again.

          I notice that others on here have another drug (something Bromide) can minimal eating and drinking still take place with that

          Glyco didn’t work well enough for me but no effect on eating or drinking or swallow. There are various other meds that can be taken to manage saliva
          Diagnosed June 2019. Bulbar palsy. Lost voice. Using PEG fitted April 2021 alongside eating normally albeit slowly and messily at times.

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            #6
            Thank You All.
            Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicates with eye gaze.

            Respiratory and blood gases still within normal range.

            No speech but sense of humour still fully intact.

            Comment

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