Advice for parent of 10yr old daughter recently diagnosed CP? — Scope | Disability forum
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Advice for parent of 10yr old daughter recently diagnosed CP?

Mrs_S
Mrs_S Member Posts: 3 Listener
edited January 10 in Cerebral palsy
Hi I’m the parent of 10 year old girl. Recently diagnosed Level 1/2 CP down left side with her toe and knee turning in and lack of balance. She has lots of other diagnosis's due to been born prem baby at 25 weeks so I’ve put a lot of the cp symptoms down to other things, until now. I feel I now have a better understanding of my daughter but not about the CP like many I have seen on here I was given the diagnosis and referral for physiotherapy….
im in the progress of learning online about what to expect from her and how her CP effects her. 
I see lot about AFOs  and ways of dealing with pain? And types of shoes? Fatigue? My daughter is always fatigued as she has short gut and colostomy. 
I’m in process of updating my dla claim for her to hopefully include mobility. But is there any tips or advice for a lost overwhelmed parent that is trying to……tred water with this weight attached. 
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Comments

  • Alex_Scope
    Alex_Scope Posts: 878

    Scope community team

    Hello @Mrs_S thanks so much for reaching out. The journey to understanding CP isn't always easy, especially during childhood. We have a Cerebral Palsy category which you're welcome to browse, as well as @Richard_Scope who is our Specialist Information Officer and Cerebral Palsy Programme Lead.

    To help our members chat with you I've moved your post into the CP category and marked it as unanswered.

    As someone who was also prem at 25 weeks and has CP, what I can say is that it effects everyone differently. My CP is mostly down my right side, and I'm a "temporary" wheelchair user. I had physiotherapy in childhood since I can remember, until the age of 16. During that time I had various inserts in my shoes to try and stabilise me when I was on my feet, as well as AFO's and lots of stretching and exercises, which I never got on with, but I know they helped. Managing fatigue is something I've got much more used to over the years, I find it's something quite personal to the individual, but it is also quite variable. As I say, every expereince of CP is different, but I hope this is useful to read for you.

    If you'd like help with DLA/PIP you can also find advice here, if that is needed. Do let us know if you need anything else, and we'll help as best we can :)

    Alex
    Online Community Coordinator
    Scope

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  • Richard_Scope
    Richard_Scope Posts: 3,003

    Scope community team

    Hi @Mrs_S
    It's really good to virtually meet you. Receiving a diagnosis can bring up a mix of emotions and it is very important for you to remember that there is no set way that you should feel.  
    Your daughter should be under the care of a paediatrician and should be given access to regular physiotherapy this will help with her mobility and coordination. We have lots of information about Cerebral Palsy and services such as Navigate and Parents Connect for families that have received a recent diagnosis.  
    I live with CP too and I'd be more than happy to talk to you about your thoughts and concerns. Please remember that you are not alone in your journey
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • Mrs_S
    Mrs_S Member Posts: 3 Listener
    Thank you for you advice and support. I think I’m more annoyed/angry that it has taken me to bring up the CP in routine paediatrician (which we have yearly since born) for anything to get diagnosed. I was told my daughter had PVl grade 3 when born and she had physo when she eventually came out of hospital then was discharged. She had standing frames at home as she wasn’t weight bearing at the correctional age. We had all of the symptoms of CP but no one had connected the dots. No further tests were needed it was a few turn of pages to the left for her previous brain scans walk up and down and there was the diagnosis. So I’m flabbergasted that it’s been so long and she has missed out on years of therapy.   
  • Richard_Scope
    Richard_Scope Posts: 3,003

    Scope community team

    I can really understand your frustration. It took my mum 3 years to get my diagnosis but that was way, way back in the late '70s. Diagnosis, as you have experienced, can be strewn with pitfalls. We have information on PVL that might be useful.
    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. 
  • Poppy_
    Poppy_ Community Volunteer Host Posts: 38 Connected
    Hi, how are you today? 
    I have CP myself, affecting both my legs, and my parents did a lot of activities with me to help build on my gait and legs, like swimming and horse riding. These may be helpful for your daughter, as these also build confidence. Swimming and water based activities helped with the spasticity in my legs, so I would get less pain. They also bought a hot tub, to help with this. I had AFOs most of my childhood and, back then, there wasn’t the options, such as the Nike fly ease or Billy’s, for shoes, so i had converse or vans, or on the rare occasion we could find anything, the orthotics department would order shoes for AFOs, but they are not the nicest things to wear.
     I hope this helps.
    Poppy_
    Community Volunteer Host with a passion for reading.

  • Mrs_S
    Mrs_S Member Posts: 3 Listener
    I am fine thank you for asking. I’ve looked at hot tubs as the Paediatrician said that warm water helps with the pain spasticity. (Until I get one we are off to my parents to use theirs..😂) my daughter has her first Physio appointment February hopefully then will have a better idea if she needs AFOs and then we can start looking at shoes thanks for the advice regarding shoes I saw the Nikes the other day in the shop they look so cool. With my daughter she has a weakness down her left side her knee turns in and her foot turns in to the point that she is sometimes tripping over week. we did rube her walk like a  pinball on a pin ball table  due to the fact she seems to bounce around the house due to poor balance. she would hit the sofa the doorframes +otherfurniture to get around because she just seems to bounce into it, outside she is like a snake she struggles to walk in straight line constantly under peoples feet, now we know it’s cerebral palsy that’s  causing this. I think my real worry is that she might end up with AFOs but then again I really don’t know what stage they give them because she was only classed as a level 1/2 on the CP scale. 
  • Poppy_
    Poppy_ Community Volunteer Host Posts: 38 Connected
    @Mrs_S yes that can be challenging, they may try sleeping AFOs, which are AFOs designed for sleeping. I would definitely look into extra curricular activities, like horse riding or disability sports, as these do help. She may require crutches or walking sticks when out and about, just to help keep her balance. I also struggle to walk, so I do wall walking, which is using walls and heavy furniture to keep me up right. The physio may suggest hydrotherapy, which is stretches in a big warm pool. 
    Poppy_
    Community Volunteer Host with a passion for reading.

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