Recent referral — Scope | Disability forum
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Recent referral

katieeb90
katieeb90 Community member Posts: 2 Listener
edited February 2023 in Cerebral palsy
Hi, 
Just looking for some information as to what happens from your referral to diagnosis? Is it a long process? 
Background for reference 
My LO was born 29+2, had bilateral grade 1 brain bleeds, enlarged ventricles, ventilated for a week then high flow oxygen, 10 weeks in NICU, positional talipes, chronic lung disease, heart murmur, anemia, apnea
She is now 8 months, not sitting, hands still fisted, leg/foot turns outwards, unable to tolerate weaning, persistent tongue thrusting, not reaching for toys or objects, leans to the left when sitting supported, unable to bare weight on legs for longer than a few seconds while being held, probably more that I can’t think of right now!
Thank you 

Comments

  • Hannah_Scope
    Hannah_Scope Posts: 7,018 Disability Gamechanger
    Hello @katieeb90

    It's different for a lot of people. Is she under someone specific like a GP or Consultant you can talk to about pushing the referral? 
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • katieeb90
    katieeb90 Community member Posts: 2 Listener
    Hi @Hannah_Scope thank you, it’s the health visitor that’s referred her in to community paeds, just feel like my head as completely fell off if I’m honest. She has a hospital paediatric consult appointment coming up so I will be asking him also. I just was wondering what the process in a diagnosis was like for parents who maybe or have been through the same thing in the meantime x
  • Hannah_Scope
    Hannah_Scope Posts: 7,018 Disability Gamechanger
    Wishing all the best for her @katieeb90 :) 

    It's a difficult one, everyone is different but with the backlog from covid and the way the NHS is at the moment, it's difficult to say. I know it's easier said than done to try and put it out your mind until you have the appointment but I also know how difficult it is waiting for a diagnosis (I have IBD). 

    Do you have family or friends around for support? 
    Hannah - She / Her

    Online Community Coordinator @ Scope

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  • Adrian_Scope
    Adrian_Scope Testing team Posts: 10,599 Scope online community team
    Hello @katieeb90 and a warm welcome to the community and congratulations on your little girl! That first year often flies past, has that been your experience? 

    I'm going to tag in @Richard_Scope who is our Cerebral Palsy specialist information officer. He works Monday-Friday so should hopefully be able to get back to you during the week.

    How long ago was your daughter referred? Hopefully you won't be kept waiting too long for some answers and the correct support. 
    Community Manager
    Scope
  • Richard_Scope
    Richard_Scope Posts: 3,614 Scope online community team
    Hi @katieeb90

    By definition, cerebral palsy is a disorder of posture and/or movement that results from the immature brain either being damaged or failing to form correctly. It is a diverse condition that affects each individual in a way that is specific to them.

    It can display itself in a way that is similar to other developmental conditions. Diagnosis is normally made by a paediatric doctor after a period of observation and tests to rule out the possibility of other conditions. A brain scan can often assist with identifying areas of brain damage but not in every case. There is no stand-alone test for cerebral palsy, diagnosis is more of a process that looks at evidence from different sources (such as medical history, general tests, scans and observation).

    The average age of diagnosis is 18 months but sometimes much later, especially if the person is only very mildly affected or has other health issues that are complicating matters. 


    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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