Cerebral Palsy
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Expecting a diagnosis of CP

Imo6Imo6 Member Posts: 4 Listener
edited April 9 in Cerebral Palsy
Hi everyone! My daughter is just over 3 months old and has had an intermittent convergent right eye since birth and less movements in her left limbs, often going stiff. We saw GP today who is doing a referral to a paediatrician. There hasn’t been mention of CP yet but my gut instinct tells me to expect a diagnosis of CP - I wanted to ask when is the usual time to be diagnosed? Thanks in advance for any advice! 

Replies

  • steve51steve51 Member Posts: 7,175 Disability Gamechanger
    Hi @Imo6

    Good Evening & Welcome 🙏🙏

    We have got some info on here for you.

    https://www.scope.org.uk/advice-and-support/come-to-terms-with-child-diagnosis/

    Please please let me know if you need any further help/advice???

    @steve51

  • Kate_ScopeKate_Scope Scope Navigate service Posts: 74 Pioneering
    edited May 2019
    Hi @Imo6

    I hope that you are well. 
    Each child is so different in relation to diagnosis, some are diagnosed at birth as they have MRI scans and the consultants can see from that. 

    My daughter was born very prematurely and we were told she was just behind milestones because of that- this was 18 years ago and things have come forward since then. My daughter had her CP diagnosis at 20 months old- when she wasn't reaching milestones. 

    I think that it really does depend, my gut told me before the diagnosis came that was what she had. Other family members didn't believe me as her vocabulary was excellent- so like yourself I started to research on the scope website to see what I could find out- this was when the internet was new and websites had just started up (showing my age there)  

    Good luck with everything and well done on trying to get more information- if in fact, it isn't a CP diagnosis, you are a bit more informed about CP anyway, what I am trying to say is you really aren't losing anything with doing some research. 

    Kate 



  • Kate_ScopeKate_Scope Scope Navigate service Posts: 74 Pioneering
    edited May 2019
    The diagnosis comes from MRI imaging these days and from the things that you tell the consultants, They obviously look for muscles movements. 

    if your child only intermittently is stiff I would suggest taking video footage of the movements- I have learned this over the years as whenever you get them in the doctor's office they are either asleep or just won't do what we need them too -every child is the same *rolls eyes*

    so take some video and photos to show them :)

    good luck 
  • Imo6Imo6 Member Posts: 4 Listener
    Thank you very much for your replies - feeling very well supported and some good tips, thank you!
  • emmarenshawemmarenshaw Member Posts: 712 Pioneering
    Hello @Imo6 Welcome to the community. I have CP myself, I think I was just shy of one. I hope you get the answers and support you need, and if you need anything we’re all more than happy to help. 

    Emma.
  • Imogen_SteeleImogen_Steele Member Posts: 42 Courageous
    Hi and welcome to the community,
    I have CP and was diagnosed at 16 months. I didn’t have an MRI. I am 23 now and am taking a year off after graduating from university. If you have any questions at all please don’t hesitate to ask
    Imogen 
  • Richard_ScopeRichard_Scope Posts: 2,838

    Scope community team

    Hi @Imo6
    I live with quadriplegic CP. I was diagnosed at 3 years old. 

    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 - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • Imo6Imo6 Member Posts: 4 Listener
    Thank you all for sharing your experiences and for the invaluable information - much appreciated. I’m curious as to what other conditions my daughters symptoms could be indicators of but I know it’s risky to start googling! I forgot to mention her head/neck also goes intermittently floppy, probably about once a day, but I’ll mention this when we see paediatrician. I try to warn people to support her head when they want to hold her but I don’t think they understand, so need some new phrases to ensure they do! Any tips for how to explain unique differences and needs before having a diagnosis? I suppose everybody is getting to know her and learn about her but I wish they would listen to my fast-track list of needs. I also wonder how long a referral takes in Monmouthshire! I understand you guys won’t have all the answers but I already feel more supported having a place to come with these queries - thank you all. 
  • Imo6Imo6 Member Posts: 4 Listener
    Those of you who found out later in life - was a diagnosis helpful? I’m unsure how much to tell people when we don’t have a diagnosis yet. My closest family members know and have noticed differences themselves, my partner is in denial so I don’t know if he would want me sharing. I personally think talking about difference helps avoid the stigma of the past - I feel proud of my daughter and want to talk about her just like any other parent would. Those of you who had diagnoses in childhood - have your parents talked about their experiences of this? Thanks again. Sorry for so many questions!
  • Richard_ScopeRichard_Scope Posts: 2,838

    Scope community team

    Don't apologise for asking questions! It's the only way that we all learn. You should feel proud of your daughter and talk about her. Any diagnosis that you may receive does not define your daughter, she is still her own person. 
    My parents, my mum, was always very upfront about me and CP. She welcomed questions and the opportunity to less open-minded people in their place! My dad didn't take things as well but everybody is different.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
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