Twin 10 year old girls going through diagnosis. What should we expect at neurology appointment? — Scope | Disability forum
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Twin 10 year old girls going through diagnosis. What should we expect at neurology appointment?

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zoe1234
zoe1234 Community member Posts: 5 Listener
edited October 2021 in Cerebral palsy
Hi everyone, just after some help and and advice. I am mum to 10 year old twin girls who are just being diagnosed with cerebral palsy . We haven’t been given the official diagnosis yet as they have been referred to neurology , mostly with it being such a late diagnosis but I have been told by the paediatrician he has no doubt it is C.P. 
I’m just so frustrated with the wait for everything. We haven’t got the neurology appointments until November and my youngest girl hasn’t got her MRI until 29th October ( he sister had an mri in August after a nine month wait, which did show brain damage so they pushed for a quicker scan for her sister ) 
Can anyone give me an idea what to expect at the neurology appointment ? It’s says we will spend a full morning there ? 
It seems to be just my daughters legs that are affected ( one of them just seems to be her right leg ) I’m just worried that we have missed out on so much help in all the time we have been awaiting diagnosis 
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  • Tori_Scope
    Tori_Scope Scope Posts: 12,492 Disability Gamechanger
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    Welcome to the community @zoe1234 :) Thanks for joining. 

    Many parents find getting the proper diagnosis for their children stressful and frustrating, so you're not alone! This isn't something I've been through personally, so I'm not 100% sure what the neurology appointment will entail. I'll tag our Specialist Information Officer for CP, @Richard_Scope, in here as I'm sure he'll have some advice and support to offer.

    I was also wondering whether you might be interested in accessing our Navigate service, which provides online emotional support for parents and carers of disabled children who are finding out about their child’s additional needs?  
    National Campaigns Officer, she/her

    Check out our Playground Accessibility Map
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  • zoe1234
    zoe1234 Community member Posts: 5 Listener
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    Hi Tori and thank you so much for the warm welcome ?
    Ive just had a brief look at the Navigate service and yes that sounds amazing. I’m so grateful for all the information on here . Thank you much x
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  • Richard_Scope
    Richard_Scope Posts: 3,648 Scope online community team
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    Hi @zoe1234
    Great to virtually meet you.
    Diagnosis of cerebral palsy is more of a process. Information and observations should be gathered from GPs, paediatricians, scans. The neurology appointment will feed into this process.

    The appointment itself will involve assessments of your daughter's movement, fine motor control, speech etc. The length of the appointment will depend upon how visible your daughter's impairment is. Cerebral Palsy covers a broad range of levels of impairment. Here is some information about Talking to a Doctor about a Diagnosis

    I hope that helps, really happy to talk with you further.

    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.' 

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
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  • zoe1234
    zoe1234 Community member Posts: 5 Listener
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    Thank you Richard and lovely to meet you . Thank you for all the information and that really helps about the neurology appointment. I know it probably sounds a silly thing to say but I wasn’t sure if they just looked at the mri in greater depth. I really appreciate all the help on here and thank you so much for taking the time to reply to me . I will have a look at that link . I think I just feel so frustrated by the amount of time everything takes,  but like you say with there being so many different levels of impairment I suppose cerebral palsy can be difficult to diagnose in some situations . I know it’s not the answer to everything to get an official diagnosis but I guess it might just help a bit 
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  • Richard_Scope
    Richard_Scope Posts: 3,648 Scope online community team
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    In my experience, it's always better to know what you are dealing with, even if it's not the news you would want. The neurologist will look more in-depth at the MRI too. They should use all of the information and tools at their disposal. One thing that I must add is; do not be afraid of asking questions. You are the expert when it comes to your daughters.
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.' 

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
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  • zoe1234
    zoe1234 Community member Posts: 5 Listener
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    Thank you Richard , I sometimes feel I ask too many questions and I guess sometimes there’s not always answers. Yes I definitely agree it’s better to know what you are dealing which . It’s seems to have taken so long to get to this point and I suppose I’m confused by the fact that the diagnosis is only happening now when they are 10 years old . I don’t know if this is a stupid question but are doctors able to tell when the lack of oxygen happened. I only ask as I had a pretty traumatic birth with my daughters but the paediatrician was saying it mostly happens during pregnancy. 
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  • Richard_Scope
    Richard_Scope Posts: 3,648 Scope online community team
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    It can occur before during or after birth. Mostly after. They would have a good idea when it occurred by looking at the birth records. 
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

    'Concerned about another member's safety or wellbeing? Flag your concerns with us.' 

    Want to tell us about your experience in the community? Talk to our chatbot and let us know. 
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  • zoe1234
    zoe1234 Community member Posts: 5 Listener
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    Thank you Richard 
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