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Glycopyrrolate and sudden onset of eye shaking/nystagmus???

aimeyladyaimeylady Member Posts: 10 Listener
Hey everyone, it's been a while I'm frantic, my girl as with all our angels is v complex, she has eye cancer and a brain injury from birth. I'm being quick as I'm hoping to get as many thoughts as possible from anyone.... Evie started at 9:30 am yesterday with nystagmus or shakey eyes out of the blue, she's 2 and a half and never done it before! The. After 5 mins she stopped, her eye team are confident it's nothing to do with the eye cancer as she was seen last Wednesday and I'm clueless and terrified! She has a sore neck from her head flicking forwards the other day during physio! She's normally in a Lycra suit but this heat has been a nightmare, this week she's had prickly heat, the runs a couple of times, no temperatures and then this morning at 7am the eye shaking started again. Have any of you experienced odd eye movements with glycopyrolate dosage being too high? My girl weighs 10 kilos is on 800mcg 3x a day but was on 600 mcg 3x a day until 5 days ago! HELP!


  • ScopeHelplineScopeHelpline Member Posts: 209 Courageous
    Hi aimeylady,

    The best thing to do would be to take your daughter to your GP's as soon as possible. As we're not medically trained professionals it's difficult to give any thoughts on what this may be related to so it's best to see a GP as soon as you can.

    Kind regards,

    Scope helpline
  • Blue FrogBlue Frog Member Posts: 373 Pioneering
    edited July 2014
    Hi Aimeylady, how is your little girl now?
  • aimeyladyaimeylady Member Posts: 10 Listener
    Hey Kathy, thanx so much for your concern, I was frantic and so worried! Right, as it stopped this morning, pead thinks it could be something linked to brain activity but not sure of trigger as she's confident not seizure, if it was brain tumor or other tumor would be v unlikely it would come and go, ears looked fine, v v odd and she's going to do stool test and if it happens again I have to call eeg dept and go straight away! EUA weds after nxt gives time to observe her behaviour, record any patterns of activity with her digestive system, moods, temp, got to keep journal!! Feel reassured but no idea why she did it! Thanks again aimey x
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