Still in the dark — Scope | Disability forum
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Still in the dark

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goteamus
goteamus Community member Posts: 2 Listener
edited August 2016 in Children, parents, and families
Hey
Im new to this
My lo is 21 months old and from the min he started walking he cant put her left foot flat... After many fights to get him seen... We have final had some tests done. Today we went to get her mri results to check for CP now ive come out of the room even more confused and distressed. He said no scaring on the brain but has static white spots on the left and right side. He couldn't tell me if its connected to his foot as his right side is perfect. We are seeing orthopedics next week who should be able to give us more info but i just feel stuck in limbo. As the doc doesnt know if they would call the white cp or if its just the way her brain is and has nothing to do with the left foot. Im so stressed... He said its nothing dangerous tumour etc and wont get any bigger. (Thank god) could just be the way the brain has formed and not tp worry 
I then feel guilty for feeling stressed as its not me dealing with this problem my lo is the happiest baba ever and nothing stops him....
Im not sure what anyone can reply but if anypne can shed any light
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  • Seadog
    Seadog Community member Posts: 11 Listener
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    What a difficult time for you Goteamus, so much information to take in but not enough to make sense of things properly. Perhaps making an appointment with the Paediatric Consultant to go over things again could be helpful? Or may be your GP could explain a little more and talk over your concerns themselves or perhaps you could discuss with a Health Visitor? It is likely that it will take a while for the full picture to emerge, which can be very frustrating, but don't feel bad about asking questions and trying to understand. Scope's Face2Face Scheme is a befriending service that you may find helpful - it links parents with other parents - there are details on the Scope website at https://www.scope.org.uk/support/services-directory/face-2-face-emotional-support-parents-online

    You may also find it useful to have a chat with a Scope Regional Information and Advice Worker who can be contacted through the Scope Helpline.  0808 800 3333, helpline@scope.org.uk

    Scope also has other information that may be helpful when you are ready to take a look http://www.scope.org.uk/support/families/diagnosed 

    Hope you find this of some help Goteamus.

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  • goteamus
    goteamus Community member Posts: 2 Listener
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    Thank you for you're reply... Thats exactly it... So much info and conflicting arguments to what it could be..  Not having the full picture.  I feel im on the phone 24/7 chasing appointments and results and everytime we see a new specialist we get passed to another... Getting no closure to an answer.
    Thank you for them links... I will have a look at them and thank you for the reply
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