Anyone out there whose child suffers from ataxia? Or a mild form of CP that showed in an MRI? — Scope | Disability forum
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Anyone out there whose child suffers from ataxia? Or a mild form of CP that showed in an MRI?

VBennett
VBennett Member Posts: 2 Listener
edited May 2018 in Cerebral palsy
Hi there,

 I’m new to the site and I’m glad I’ve found it. Our son has been diagnosed with developmental delays. We’re waiting for blood test results and will possibly need to do an MRI. Gross motor skills and language most affected. However we’ve been told he also had Sensory Processing Disorder and that this affects his behaviour. He’s also hyperactive:( 
hes only 22 months old but we’ve always known there was something not quite right about him. He started to sit unaided at 10 1/2 months. Delayed milestones was then our first red flag. He walked at 18months but he’s still unstable on his feet. The suspicion is that he suffers from ataxia a type of CP in a mild form. 
Physios and community paeds have just watched passively but done no tests or treatment. It wasn’t until we saw a paediatric neurologist privately that we were finally heard. It’s so hard dealing with the unknown. I’m pushing for a formal diagnoses but even the consultant can’t say what it’s wrong with my son. She believes that his problem is developmental rather than neurological though this doesn’t offer much comfort. 
Anyone experiencing this? Anyone out there whose child suffers from ataxia? Or a mild form of CP that showed in an MRI?
TIA for your advice 

Comments

  • JennysDad
    JennysDad Member Posts: 2,299 Disability Gamechanger
    Hello @VBennett and a warm welcome to the community. Very glad you have found us.
    A quick search on here did not bring up much for me on ataxia, but that could be down to me or to the way the search engine functions. We do have many members and specialists with knowledge of CP in its many forms and degrees, so I'm going to tag our specialist in here so that he gets to see your post as quickly as possible.
    Warmest best wishes to you,
    Richard
    @JennysDad
    @Richard_Scope
  • VBennett
    VBennett Member Posts: 2 Listener
    Thank you Richard! We are in dear need of support
    Victoria
  • Richard_Scope
    Richard_Scope Posts: 3,176 Scope online community team
    Hi @VBennett
    Welcome to the Community. Trying to get a diagnosis is a very stressful and I can empathise with what you and your family are going through. I'm going to include some links to some discussions and information that you might find helpful.

    This is advice on receiving a diagnosis:
    https://www.scope.org.uk/support/families/diagnosis  

    This is a link to discussions by parents and carers:
    https://community.scope.org.uk/categories/carers-of-disabled-children-and-adults 

    We also have a helpline that you can call for one to one advice on 0808 800 3333

    I hope that is of some help. We have lots of members that may be going through a similar situation and will be keen to help.

    Great to meet you.
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • rankin1st
    rankin1st Member Posts: 3 Listener
    might be worth contacting ataxia UK they are great and a real supportive online community too also a separate forum for parents with children with ataxia
    https://www.ataxia.org.uk/ 

  • NatalieW
    NatalieW Member Posts: 4 Connected
    Hi @VBennett. I have mild ataxic cerebral palsy. I was diagnosed with dyspraxia at the age of 3 and didn't find out that I also had mild CP until I was 13. I didn't have an MRI scan - it was considered but they decided not to. So it's not compulsory to have an MRI scan to get a diagnosis. Just seen the date of your original post after writing this - hopefully things have been going a bit better in terms of getting a diagnosis since then?
  • nemesis
    nemesis Member Posts: 2 Listener
    Hi have mild CP at 2 years old and hand a MRI scan 20 years ago but nothing that the the neurologist could tell me he said it does not always show up

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