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Recent diagnosis

Hi, my daughter was recently diagnosed with Dyskenetic/dystonia CP (hypoxia at term). This has come as a complete shock to the family because we were not told of any concerns at birth. I became concerned about her development when she was six months and basically visited the GP as often as I could. However, we were told she had slight developmental delays and she would catchup until I became frustrated and went to see a private pediatrician. After all the investigations, we finally received the news 8 weeks ago (she is now 12 months old).

It's has been difficult getting face to face help for her due to the whole Covid19 situation but we started private physio immediately and OT every other week while waiting for the NHS referrals to come through. 

I just wanted to reach out on here to see if anyone has advice on what I could be doing, best specialists or treatment managements etc...

Apologies for sending such long message. Just needed to reach out. 

Thank you!!

Replies

  • AnneWithAnEAnneWithAnE Member Posts: 6 Listener
    Hi there, although i do not have the same diagnosis as your child, I do however, suffer from dypraxia and ADHD. As a result, my mum enrolled me in a treatment program in London at the childrens development center that was run by David Mulhall. He focuses on a series of different development difficulties etc. From my personal experience and my mums, I think you need to keep going as you are by not stopping in your quest for answers. Many doctors have disregarded/ignored many of our reported issues but it was from my mums perseverance and mine as I have grown in adulthood that have truly given me a more focused path for my diagnosis' and treatment. 

    I am sorry I cannot give you more help but just know that you are doing the right thing for your child and that is all you can do. 



  • chiariedschiarieds Community Co-Production Group Posts: 8,066 Disability Gamechanger
    Hi @rabiodia - Welcome to the community, & thank you for joining. You sound like you have done everything you could, fighting to get answers. As a physio (tho I qualified as such a long time ago), I'd just like to say I worked with young children that had CP, & passionately feel it can help, so it's great that you have been so pro-active in starting this, especially at this current time.
    Don't apologise for your post; the more you say, the more we can often help, even if all we do is listen. Be assured we'll all support you about your concerns for your little daughter. :)
    In this online community we have a CP Specialist Information officer, who himself has CP. I'll ask him for his advice. @Richard_Scope I would appreciate your advice, thank you.
  • janer1967janer1967 Member Posts: 9,289 Disability Gamechanger
    Hi @rabiodia Welcome to the community its great you have joined us.

    I don't have any knowledge if your daughters condition but it sounds like you are doing an amazing job getting her the support she needs.


    I hope other members can offer you advice  
  • steve51steve51 Member Posts: 7,175 Disability Gamechanger
    Hi @rabiodia

    Good Afternoon & Welcome to our online community/family.

    Yes you have got the right idea/fighting for your child.

    Here’s some great info below for you.

    https://community.scope.org.uk/discussion/70266/adhd

    https://community.scope.org.uk/discussion/64476/adhd-support

    Please please let me know if you any further info/support??

    @steve51


  • rabiodiarabiodia Member Posts: 3 Listener
    Thank you all very much for your reply!! 

    @AnneWithAnE; I have contacted the David Mulhall centre, hopefully I should hear back today. 

    Much appreciated!! 

    Thank you!!
  • Richard_ScopeRichard_Scope Posts: 2,733

    Scope community team

    Hi @rabiodia, really good to meet you!

    You are doing a fantastic job! Covid-19 has had a marked effect on other services, particularly physiotherapy and hydrotherapy
    We have some information about CP and diagnosis which might be helpful Have you heard of the Bobath and Pace centres? Both centres offer specialised treatment for children with CP and beginning at an early age can have a hugely positive effect on independence.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • rabiodiarabiodia Member Posts: 3 Listener
    Haven't heard about them at all.

    Thank you very much. I will take a look now and contact them. 

    Thanks again!!  

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