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5 year old diagnosed with spastic diplegia last year can anyone give any advice

Mum1490Mum1490 Posts: 23Member Connected
Hi everyone,

last year my little girl was diagnosed with spastic diplegia she’s affected both sides shown by mri but currently only presenting on her right side, she’s constantly poorly, suffers with tremors, has nerve palsy in her eyes falls over a lot and struggles to keep up with her peers! On some days myself or my partner will have to pick her up and carry her to places around the house as she just cannot do it. She has a wheelchair as she cannot walk distances and sometimes struggles to eat as her tremors are bad and she doesn’t sit on her bottom tends to sit on her back! She has a special chair at school but it’s too small now. 

All we have been told is day by day will vary and she was referred to community care who we haven’t seen in a long time apart from a physio therapist 3-4 months ago and everyone else seems a nightmare to get hold of. We was also told she could end up with epilepsy in the future!!

Any advice would be sooo appreciated 😊

Replies

  • Richard_ScopeRichard_Scope Posts: 1,664Administrator Scope community team
    Hi @Mum1490 ;
    Great to meet you and welcome to the community.

    Your little girl should be having regular physiotherapy and still be under the care of a paediatrician. If this is not happening, the first thing I would do is contact your G.P. How long ago was your daughter diagnosed?
    Scope
    Specialist Information Officer - Cerebral Palsy
  • Mum1490Mum1490 Posts: 23Member Connected
    Hi Richard,

    Thanks for your reply.
    Amelie was diagnosed last year at great ormand street.

    All our GP says is it’s down to her community care team but everytime I mention they are not easy to get hold of you keep getting different people different numbers all I get is to keep trying. 

    At the moment it works out she sees her physiotherapist 6monthly and last check they said her muscles have become a lot tighter and they wanted to refer her to the paediatric team for talk of possible surgery? Since then been nothing and there’s no direct number for them.


  • Richard_ScopeRichard_Scope Posts: 1,664Administrator Scope community team
    Your daughter should be having physiotherapy on a weekly basis. That will be very beneficial for her muscles and her posture. We have an excellent dedicated team called Navigate that is a national mentoring service, that provides online emotional support for parents and carers of disabled children who are finding out about their child’s additional. My colleagues at Navigate have real lived experience.
    Scope
    Specialist Information Officer - Cerebral Palsy
  • Mum1490Mum1490 Posts: 23Member Connected
    Thank you so much I’ll check it out 😊
  • Mum1490Mum1490 Posts: 23Member Connected
    Thank you so much I’ll check it out 😊
  • Richard_ScopeRichard_Scope Posts: 1,664Administrator Scope community team
    No problem @Mum1490 ;
    We're here to support you.
    Scope
    Specialist Information Officer - Cerebral Palsy
  • Mum1490Mum1490 Posts: 23Member Connected
    @Richard_Scope do you know what I could do to help my daughter with exercise? I’m in a catch 22 situation she gets extremely tired with walking etc but been suggested to take her swimming, horse riding etc... but where I’m am unable to keep a job because I’m off with little one so much I’m unable to afford it I need to look for alternatives any suggestions? 
  • Richard_ScopeRichard_Scope Posts: 1,664Administrator Scope community team
    @Mum1490, what area of the U.K. do you live? 

    Scope
    Specialist Information Officer - Cerebral Palsy
  • Mum1490Mum1490 Posts: 23Member Connected
  • Richard_ScopeRichard_Scope Posts: 1,664Administrator Scope community team
    I will do some research and get back to you :)
    Scope
    Specialist Information Officer - Cerebral Palsy
  • Mum1490Mum1490 Posts: 23Member Connected
  • Richard_ScopeRichard_Scope Posts: 1,664Administrator Scope community team
    I have found these links:

    Hydrotherapy Essex

    Inclusive Active Essex

    Your local council should have discounted activities. I will keep looking for you.
    Scope
    Specialist Information Officer - Cerebral Palsy
  • Mum1490Mum1490 Posts: 23Member Connected
    Thank you 😊 
  • Richard_ScopeRichard_Scope Posts: 1,664Administrator Scope community team
    Are you receiving all of the money that you are entitled to @Mum1490?
     

    Scope
    Specialist Information Officer - Cerebral Palsy
  • Mum1490Mum1490 Posts: 23Member Connected
    I’m not receiving anything I don’t know what I’m entitled too. 
  • Adrian_ScopeAdrian_Scope Posts: 3,508Administrator Scope community team
    Hi @Mum1490 and a warm welcome to the community. :)

    A lot of benefits are means-tested so would take into account your household circumstances but there are a few that aren't. 

    To start, can I ask if have you applied for DLA (Disability Living Allowance) for your daughter?
    Senior Online Community Officer
    Scope
  • Richard_ScopeRichard_Scope Posts: 1,664Administrator Scope community team
    Here is a Benefits Checker to help you find out what you are entitled to. Your daughter is entitled to DLA (Disability Living Allowance). 

    Here is the link to the DLA ‘how to’ pack  https://contact.org.uk/media/1172324/claiming_dla_for_children.pdf




    Scope
    Specialist Information Officer - Cerebral Palsy
  • Mum1490Mum1490 Posts: 23Member Connected
    Hi @Adrian_Scope, thank you for the welcome 😊, I have tried DLA for my daughter but it was declined when I called them again yesterday they said I had to re apply. We struggle to understand the rejection as she has a wheelchair for distance, suffers with tremors and there are a lot of times we need to help feed her as she is unable to feed herself, she sits on her back and not her bottom and needs a chair which I’m waiting on and a specialist chair at school. I feel very upset as I don’t know what to do to help.. we have to lift her in and out of the bath help her get dressed 🤷‍♀️ Apologies for rambling 
  • Adrian_ScopeAdrian_Scope Posts: 3,508Administrator Scope community team
    edited October 8
    You're not rambling at all @Mum1490! It must be really frustrating for them to say she doesn't have any additional care needs when you know she does. Can I ask how long ago the decision on her DLA was made? It may still be possible to appeal rather than re-apply. 
    Senior Online Community Officer
    Scope
  • Mum1490Mum1490 Posts: 23Member Connected
    @Adrian_Scope just before Christmas last year we got the letter saying it had been declined so they’ve told me to re apply. It’s very upsetting as I’m trying to help as much as I can but have to leave my jobs as of her being poorly or falling over and a lot of the time she doesn’t put her hands out so her head normally ends up being impacted by her fall. They’ve told me to send all the letters I have as evidence I did this last time they had myself and her dad filling the form in, letter from SENCO at school, her teacher, Basildon hospital and great ormand street. 
  • Adrian_ScopeAdrian_Scope Posts: 3,508Administrator Scope community team
    edited October 9
    Hi @mum1490. Did you appeal the decision at the time? I've just had a quick chat with our benefit adviser @Joanne_Scope who has said it could be possible for you to both appeal the old decision and submit a new application. 

    Did you have any help filling in the forms the first time? There's a charity based in Essex called 'Families in Focus' that offer help to complete them which might be useful to you. If your daughter is successfully awarded middle or higher rate care component of DLA you'd then (assuming you meet the other criteria) be able to claim Carer's Allowance too.
    Senior Online Community Officer
    Scope
  • Mum1490Mum1490 Posts: 23Member Connected
    Hiya,

    I didn’t appeal the last one I asked about it this time and they told me I have to fill in another? I would really appreciate anyone helping to fill in the form as I’m currently off with my daughter again at the moment because she is ill.
    😊😊
  • Richard_ScopeRichard_Scope Posts: 1,664Administrator Scope community team
    The Families in Focus charity can help you fill in the forms. I would ask them for help to appeal the first decision as well.
    Scope
    Specialist Information Officer - Cerebral Palsy
  • Mum1490Mum1490 Posts: 23Member Connected
    @Richard_Scope @Adrian_Scope thank you I’ll contact them 🙂
  • Adrian_ScopeAdrian_Scope Posts: 3,508Administrator Scope community team
    That's great, please let us know how you get on. :)

    It's possibly a little far but Families in Focus also run activity sessions for disabled children in Chelmsford and a drop-in session for parents/carers in Braintree.
    Senior Online Community Officer
    Scope
  • Mum1490Mum1490 Posts: 23Member Connected
    I will do. Thank you all so much absolute ⭐️’s 
  • ChristineHughson7ChristineHughson7 Posts: 4Member Listener
    Hello my lovely @Mum1490

    It can feel like a complete rollercoaster of emotions early days with all the paperwork and appointments. What I would offer as a reminder is that yes, diagnosis can give us an understanding of the physical limitations of our child and how that might play out. However, it is in no way a marker for what your child can achieve.

    She will find her way in life and it sounds as if she has an excellent support in you and your husband. I would hold that in mind as it can feel a bit of a bombardment at times in the early days with lots of competing information from professionals. 

    Our little girl on paper in all the professional documents is seen as “severely impaired” - in that she can’t walk, talk or sit unaided. However she is second in her class, full of lovel for life and learning, managing to keep up in mainstream and spelling out stuff using her eyes. Shes better at maths than I am at seven and has taught me more about strength and humanity in her seven years of life than I had learned in my previous 36 years. She’s a legend. So, listen to what the professionals have to say, take what’s useful to you and leave the rest in the room. 

    Yes, I agree that because of the complications of brain injury our children are more likely to be susceptible to developing epilepsy, but it is not a given. And can I say I think that’s a little bit naughty of them to have suggested that, though I understand the need for flagging that up. 

    Ah the joys of DLA I am in the process of redoing our form and we will see how we go with it come January renewal. Good to hear the dudes here have linked you in with support for that. Anything you want to talk about, please feel free to reach out. 

    Wishing you a peaceful day 
    Christine x
  • Mum1490Mum1490 Posts: 23Member Connected
    Aww good that’s wonderful to hear.. Amelie is always smiling and sooo bright nothing gets to her she gives everything a try and I love that! 

    Sophie is amazing I think maths has changed so much now 😂 nothing like it was when I was at school and I’m 29 

    Have you had to appeal your DLA Too? I’m pretty sure that form has a lot of the same questions but worded differently 🤷‍♀️ It’s helped so much talking to everyone here 😊

    Xx
  • Mum1490Mum1490 Posts: 23Member Connected
    @Adrian_Scope I’ve sent a form into families in focus just waiting for hear back 👍🏻 Thanks again 
  • Adrian_ScopeAdrian_Scope Posts: 3,508Administrator Scope community team
    That's great @Mum1490, I hope you hear back from them soon. :)
    Senior Online Community Officer
    Scope
  • Mum1490Mum1490 Posts: 23Member Connected
    @Adrian_Scope hi Adrian,
    spoke to families in focus but they cannot help me as I’m not in the catchment area 
  • Adrian_ScopeAdrian_Scope Posts: 3,508Administrator Scope community team
    Hi @Mum1490, I'm so sorry, their website indicated they covered the whole of Essex.

    Have you ever heard of DIAL? They also help with benefit claims and the South Essex one is actually based in Grays on West Street: https://dialsouthessex.co.uk/

    "DIAL now offers its service between 10am and 3pm on Mondays, Tuesdays, Wednesdays and Fridays. We are closed to members of the public on Thursdays. People can drop in to see us, telephone or email us with their problems. One of our friendly staff or volunteers will be happy to help you. Appointments are needed for help with completing benefit application forms, blue badge application forms, housing applications, Mandatory Reconsideration Letters and Appeal Submissions."

    CAB can also help with form filling but there can sometimes be a wait to get in: https://www.citizensadvice.org.uk/local/south-essex/contact-us/?serialnumber=100353

    Senior Online Community Officer
    Scope
  • Mum1490Mum1490 Posts: 23Member Connected
    @Adrian_Scope That’s brilliant Adrian thank you do I make an appointment via the link you sent? 

    I did look at the blue badge but is says you have to be in receipt of other benefits such as Disability Allowance. 


  • Adrian_ScopeAdrian_Scope Posts: 3,508Administrator Scope community team
    No problem at all @Mum1490.  I've copied their contact details below and they'll be able to book an appointment with you and go through your options. 

    DIAL SOUTH ESSEX

    THE BEEHIVE COMMUNITY RESOURCE CENTRE

    WEST STREET

    GRAYS, RM17 6XP

    Tel: 0333 366 1045

    Mobile: 07786 088538

    Outreach Mobile: 07826 902087

    Email: [email protected]

    Senior Online Community Officer
    Scope
  • Mum1490Mum1490 Posts: 23Member Connected
    Hi @Adrian_Scope I’ve emailed them. 
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