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Advice about my daughter

MelokuhleMelokuhle Posts: 3Member Listener
edited August 2018 in Cerebral Palsy
Hi everyone my child Kathleen lacked oxygen at birth and was later on diagnosed with cp,She doesnt sit nor talk or walk still on nappies,she started biting her lower lip with her top front ones and now the lip is no more the doctors couldnt help us and still refused to remove her teeth, shes always in pain..at two and a half she started having convulsions every now and then and now shez four years 7 months on epillim and still biting her lower lip,i have to hold her mouth all the time to prevent her from biting
For her its a combination of disorders the ambrella one being CP then the biting and epilepsy i keep wondering if she will ever sit on her own be independent just a bit because we dont sleep she screams sometimes when she bites her lower lip when i am not holding it at night, its hard guys so so hard
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Replies

  • Ami2301Ami2301 Posts: 4,987Community champion Disability Gamechanger
    Hi @Melokuhle

    Welcome to the community!

    I can't begin to imagine how distressing this is for you, hopefully there is a member within the community who has had a similar experience so they can share advice, if not, we will do what we can to help :)

    Ami :)
    You're a fighter. Look at everything you've overcome. Don't give up now!
  • Chloe_ScopeChloe_Scope Posts: 2,549Administrator Scope community team
    Hi @Melokuhle and a warm welcome to the community! I am really sorry to hear about your situation, it must be really difficult. What current support do you and your daughter have in place? I have Cerebral Palsy myself and know it can be incredibly difficult to predict the future in terms of milestones. Has hard as this can be, please take everyday as it comes and enjoy the moments. Please do use the community for support and guidance. You may find the parents and carers and Cerebral Palsy board useful for you. I am also tagging @Richard_Scope who is the Cerebral Palsy information specialist.
    Hope you have a lovely day and if you need anything else then please do let me know!

    Chloe
    Online Community Officer
  • Richard_ScopeRichard_Scope Posts: 1,493Administrator Scope community team
    Hello @Melokuhle ;
    Good to meet you. It sounds like you are going through an incredibly difficult time at the moment. I agree with my colleague @Chloe_Scope it is difficult to make solid predictions based upon milestones. Is your daughter under the care of a paediatric neurologist? Here is some information about Epilepsy and some organisations that you can contact. If you need to talk please get in contact.
    Scope
    Specialist Information Officer - Cerebral Palsy
  • MelokuhleMelokuhle Posts: 3Member Listener
    Hi @Melokuhle and a warm welcome to the community! I am really sorry to hear about your situation, it must be really difficult. What current support do you and your daughter have in place? I have Cerebral Palsy myself and know it can be incredibly difficult to predict the future in terms of milestones. Has hard as this can be, please take everyday as it comes and enjoy the moments. Please do use the community for support and guidance. You may find the parents and carers and Cerebral Palsy board useful for you. I am also tagging @Richard_Scope who is the Cerebral Palsy information specialist.
    Hope you have a lovely day and if you need anything else then please do let me know!


  • MelokuhleMelokuhle Posts: 3Member Listener
    Hi Chloe

    She is currently attending occupational therapy and physio and epilepsy clinic. Physio isnt helping that much because we dont have any equipment to help her out and now her feet are curving in.

    i just need all the information thats there to help me cope.
  • Richard_ScopeRichard_Scope Posts: 1,493Administrator Scope community team
    Hi @Melokuhle ;
    Has the Occupational Therapist spoken with you about equipment and adaptions that Kathleen might need?
    Scope
    Specialist Information Officer - Cerebral Palsy
  • Chloe_ScopeChloe_Scope Posts: 2,549Administrator Scope community team
    Hi @Melokuhle, and thank you for getting back to me! I know from experience that PT and OT can take time to see progress. It is definitely worth it though! I hope the community is able to offer some support.
    Chloe
    Online Community Officer
  • newbornnewborn Posts: 218Member Pioneering
    This looks shocking.     Doctors have allowed pain and injury to Kathleen  which could have been avoided. 

     They dismissed your reasonable sensible request to have her two offending top teeth removed.     It should have been done at once, when you first suggested it, long before, if I understand you,  she permanently injured herself by biting her lip away. 
  • Jean_OTJean_OT Posts: 532Volunteer community advisor Pioneering
    Hi @Melokuhle

    I'm wondering if you have had contact with the Community Dental Service? They are part of the NHS and specialise in finding dental solutions for people with additional needs. Removing healthy teeth is a big decision and sometimes there are clinical reasons that mean it not advisable (anesthesia risks etc) but under the circumstances I can see why you would want to explore the options. If it's not possible to remove the teeth I'm wondering  if some sort of orthodontic shield might be possible for night time use, to give you opportunity to rest. I suspect the community dental service are the best people to explore this with.

    This is a link to the service for East Anglia: https://communitydentalservices.co.uk/ I don't know where you are but I thought this regional website did a good job of explaining what community dental services are about. If you are in another region there is a phone number for getting information on your local service: https://communitydentalservices.co.uk/our-services/not-in-your-area/

    If you haven't already done so I would also suggest that you make an urgent appointment with the disabled children's team (they might be called something different where you are) at your local authority and ask that they assess both your daughter's care needs and your needs as a carer. Perhaps it would be useful/possible for the local authority to provide some short break/respite care for your daughter so that you can occasionally have a night of undisturbed sleep.

    Do try to persevere with the OT, it can take a while to get proper provision in place. If your daughter has identified equipment needs that the NHS/local authority can't meet you might be able to get charitable funding to assist with the cost of buying it privately. Good places to try for grants would be:
    Newlife: http://newlifecharity.co.uk/docs/care-services/Newlife-Equipment-Grants.shtml and the Family Fund: https://www.familyfund.org.uk/

    Newlife also have an emergency equipment loan service for those that just can't wait for statutory provision to happen, to explore this further it might be best to speak to their nurse lead helpline: 0800 902 0095 

    Best Wishes
    Jean 
     

    Jean Merrilees BSc MRCOT

    You can read more of my posts at: https://community.scope.org.uk/categories/ask-an-occupational-therapist

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