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First appointment with neurologist; any advice would be great

a_foakesa_foakes Member Posts: 20 Connected
Hi,

This is my first time posting. My daughter Annabelle was one of twins born prematurely (24 weeks) and although her MRI only showed enlarged ventricles she has just been diagnosed with 4 limb cerebral palsy, mixed spastic and dystonic. She is 1 yr old (8 and a half months corrected) and has just learned to roll but cannot hold her head up for very long or push herself up on her arms. Her right hand side is much weaker than the left and her involuntary muscle spasms seem to be particularly bad in her right hand. We have our first appointment with a neurologist on the 3rd October and I want to be as prepared as possible to get the most out of it. So far she's not on any medications and receives NHS physio about once a month, although we pay for a private physio once a week. Any advice on how best to prepare for our meeting would be greatly appreciated and I'd love to hear from any mums who are / have been in a similar situation. Thanks for reading this post. 

Replies

  • Ami2301Ami2301 Community champion Posts: 6,838 Disability Gamechanger
    edited September 2018
    Hi @a_foakes
    Welcome to the community! Unfortunately I don't know how to advise however I'm sure @Chloe_Scope, @Richard_Scope and many other members of the community will be more than happy to get in contact with you to offer support and advice. I wish you all the best for the appointment and please keep us updated if you need further support :)
    Community Champion
    Disability Gamechanger - 2019
  • Ami2301Ami2301 Community champion Posts: 6,838 Disability Gamechanger
    In the meantime, you might like to check out the discussions in Parents and Carers and Cerebal Palsy to read about other members experiences and to gain support :)
    Community Champion
    Disability Gamechanger - 2019
  • Chloe_ScopeChloe_Scope Administrator Posts: 10,643 Scope community team
    Hi @a_foakes and a very warm welcome to the community. Thank you for taking the time to share this with us all. The first appointment will probably just be going through your daughters history and them doing a basic physical exam. I too have CP which is why @Ami2301 very kindly tagged me in the post. I would recommend writing down any questions you may have and try to keep calm. These people want to support your daughter and I hope they can provide you with support and guidance. Please do let us know how it goes and I wish you the very best of luck :) 
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  • a_foakesa_foakes Member Posts: 20 Connected
    That's so kind of you, thanks Chloe. I really appreciate you taking the time to answer. I hope you don't mind me asking but what sort of CP do you have? I want so much to get a better understanding of what my daughter's future might hold though I understand the possible future outcomes are very wide ranging at this stage. 
  • Chloe_ScopeChloe_Scope Administrator Posts: 10,643 Scope community team
    Not a problem at all! I have mild triplegic spastic cerebral palsy affecting my legs and left arm. It is great that you are wanting to know more. CP is very diverse and no two people are affected the same. That said, we do have common traits that we have similar to each other :)
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  • arichmondarichmond Member Posts: 14 Connected
    Hi @a_foakes

    Just thought I'd add that as someone with mild diplegic spastic cerebral palsy, I second @Chloe_Scope 's points and maybe ask if you can have them summarise what they have said to you at the end of your appointment, just so yo can have that in mind for any more questions you might have or further information you may want.

    Wishing you and your daughter all the very best! :smile:
  • a_foakesa_foakes Member Posts: 20 Connected
    That's really helpful, thank you and I will definitely do that. I'm so grateful and touched by how kind everyone in this community is. 

    Thanks again,

    Abi 
  • arichmondarichmond Member Posts: 14 Connected
    No problem at all! Really glad you're finding the Community supportive, that's what it's here for :smile:
  • Katnip63Katnip63 Member Posts: 2 Listener
    I dont have a child with the challenges your child has but i have 2 grandchildren with ASD and only advice i would give to yourself and anyone else is think about questions and things you want to ask and get answers for and write them down in advance, once you get to you appointment your mind  goes blank and it helps to have it written down, same at appt write down answers. If you are in UK, no matter where fight for the support your child needs, get everyone on board NHS, Education Specialists etc. Its heavy going but you need to keep at them, also try your MP etc, get everyone on board. Sorry about ranting but had lots of fights with authorities for my grandkids and their mother had had many problems with school but shes a fighter also, and it pays off. Good luck, hope the apt goes well,
  • a_foakesa_foakes Member Posts: 20 Connected
    I am really sorry to hear about how much you've had to fight for your grandchildren, they are very lucky to have you. Thanks for the excellent advice, I'm very grateful to you and everyone else who has been so kind and helpful.
  • Chloe_ScopeChloe_Scope Administrator Posts: 10,643 Scope community team
    The very best of luck with your appointment next week @a_foakes :)

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