Need help for my daughter who has Cerebral Palsy

AlisonG09
AlisonG09 Online Community Member Posts: 2 Listener
edited October 14 in Cerebral Palsy Network

I am in desperate need of some help. My daughter Aimee has Cerebral Palsy and recently had a sore mouth which led to her movement of her tongue to get worse and then her body movements in general. She and I are finding it nearly impossible to sleep. She has upped her Baclofen a week ago to 20mg three times a day but doesn't seem to be helping her yet. Any suggestions??

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Comments

  • durhamjaide2001
    durhamjaide2001 Scope Member Posts: 15,293 Championing

    hi there and welcome to the forum the only thing I can suggest is that you seek medical attention if the increased dose isn't working for her.


    The only other thing I can suggest is that you visit the coffee lounge for a general chat or the games den for some fun. You could also check out the CP network that Scope runs

  • AlisonG09
    AlisonG09 Online Community Member Posts: 2 Listener

    Hi yes we've got a referral to see a Neurologist but could take ages knowing the NHS

  • Rachel_Scope
    Rachel_Scope Posts: 2,040 Scope Online Community Coordinator

    Hi @AlisonG09, I'm going to tag our wonderful Cerebral Palsy team who will hopefully be able to help you 😊

    @Richard_Scope @Lucy_Scope @SaraC_Scope

  • SaraC_Scope
    SaraC_Scope CP Network, Scope Posts: 331 Empowering

    Hi @AlisonG09

    I'm Sara one of the CP specialists here at Scope. It sounds like you are both going through a tough time. I understand how lack of sleep makes everything else more challenging.

    You mentioned Aimee has a sore mouth. Has she been seen by her dentist? There might be an underlying issue with her teeth or gums.

    Otherwise it might be worth taking her to the GP, explaining the situation and request a sooner apt with her paediatrician.

    There is a great Facebook page for families and carers of people with CP called Cerebral Palsy UK It's a great space to ask questions and get advice and support.

    My colleague Lucy also hosts a monthly online parent group. Sometimes it's helpful to speak to others in a similar position.

    If you need any further help and support, please contact our team.

  • Richard_Scope
    Richard_Scope Posts: 3,818 Cerebral Palsy Network

    Hi @AlisonG09

    It sounds like your daughter may have an underlying infection. While her body is dealing with infection, it will have a knock-on effect on movement, mood, etc.

    I would speak with your child’s GP and dentist, or even a speech therapist who can assess the soreness and help you ensure your child is swallowing correctly, making it easier to keep their mouth clean.

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