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Searching for a diagnosis for my son

MYBOYJDMYBOYJD Member Posts: 6 Listener
edited May 2018 in Parents and carers
Hi I’m new to this and on a lengthy road to a diagnosis for my son. It’s hard to find answers and get the right support so thought I would try here. Jayden has severe developmental delay,sensory problems,low muscle tone,problems feeding, involuntary movements and it goes on and on were waiting to see a group of peaditricians hopefully for a diagnosis also MRI scan physio and Speach Theraphy for eating and drinking. Well there’s a bit about what’s going on. Think I was just ment to say hello but got carried away. Thanks for reading 

Replies

  • JennysDadJennysDad Member Posts: 2,308 Pioneering
    Hello Jayden's Dad @MYBOYJD and a very warm welcome to you. Glad you've found us.
    You are having a tough time right now, I think. Been there, or somewhere close.
    And don't worry about the format here - long introductions are welcome, especially when they contain useful information as yours does. Indeed, any contributions are welcome - we're here to listen.
    So we have to get to the bottom line, now :smile: If you can, please tell us more, especially about how you are feeling, how you are coping, what impact your son's condition is having on your lives and what kind of help you may need. And anything else you can think of that might help us find ways to be of use to you.
    Very warmest best wishes to you and to Jayden,
    Richard
    @JennysDad
  • gwen65gwen65 Member Posts: 16 Connected
    MYBOYJD hi welcome i've not been on here long either you do get alot of support has he got a social worker my son's autistic and i didi get alot of support when he was younger the problem is there are so many experts in their fields do you have advacate service in your area these are a group who can collate all the information i know this service is few and far between i might be worth trying 
  • Pippa_ScopePippa_Scope Member Posts: 5,856 Disability Gamechanger
    Hi @MYBOYJD, welcome to the community! It's great to have you here.

    Thank you for sharing this with us- I'm sure many of our community members will be able to empathise with your fight to find the right support. Do get involved with the community, and if we can be of any assistance, please do let us know.
  • MYBOYJDMYBOYJD Member Posts: 6 Listener
    @JennysDad thank you for the warm welcoming. I’m just looking for any support really. Do I have to get a diagnosis before I can get help thou? I’m so confused with everything and frustrated with all the waiting for appointments,scans etc. But more than anything I want my son to be comfortable and find adaptations for him and for my home. See he’s in a standard pushchair at the moment but he slouches and gets very uncomfortable and bangs his head on the bars. I have tried rolling blankets up to put down the sides and down his back to keep him upright but now he looks restricted and gets hot. So my question really is how do I go about getting special equipment for his needs? Sorry with the essay but hard to put everything in a short text. 
  • JennysDadJennysDad Member Posts: 2,308 Pioneering
    Hello Jayden's Dad, @MYBOYJD and thank you for getting back to us.
    Although it seems Jayden does not have a specific diagnosis at the moment, he has presumably been 'diagnosed' as having problems, even if they're not specifically identified. Logically (if only the world we inhabit was logical!) that ought to enable you to at least talk to your local Occupational Therapy people. My local council has a Disabled Children's Services department - yours might be worth a look.
    Other advice I must leave to those who know more about how things currently work (or don't), my own experience being from a long time ago.
    If your current experience is anything like my own, you have begun a long and stressful journey and you may have anger and grief issues to cope with. If it would help to talk, remember I'm here.
    Warmest best wishes,
    Richard
    @JennysDad
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