Over 2 years and no diagnosis - how can we help our son walk?

Agrontota

Hi my name is Aragon my son Alex is born on 27 09 2014 and he's not able to walk is referred at Great Ormond Street Hospital since 2016 it's been over 2 years now and is still under investigation and not diagnosed yet he does physiotherapy speech language my son Alex can use a walker he can get up and down by holding around the sofa he hasn't managed to take forward any independent step great Homer Street has told us he'll be able to walk on his own time but it's been such a long time is reaching 5 now and it's not working independently 
And it's been over 2 years great Homer Street haven't found diagnosed yet can anyone who's going through the same situation the moment give me any advice what can I do to support my son more than I'm trying to or take him somewhere where he could get the right help so we can improve with his walking

Ami2301

Hi @Agrontota welcome to the community! Sorry to hear this, it sounds like a worrying time for you as you want to get the best treatment for your son. You may find the information provided in getting a diagnosis for your child helpful. 

Please keep us updated and let us know if you need any further help

Agrontota

Thanks can anyone recommend me any special treatment I can provide four my son my wife is struggling alot to do the best four are son

Sam_Alumni

Hi @Agrontota
We cant give any medical advise on the community Im afraid. It must be a very stressful time for you especially not having a diagnosis.

Knowing how to find local support when you’re getting a diagnosis for your child can be difficult. Especially if you’re not sure when you’ll get a diagnosis or what sort of support you’ll need and what you can get. If your child has additional needs, you can apply for support services from your local authority. 

You can still get support without a diagnosis of a specific condition if your paediatrician or doctor has identified your child's additional needs.

Your child may have a mix of conditions, which can make diagnosis difficult. You’ll still need and be entitled to support and local services.

Contact your local authority.

The local offer and finding support services

Local authorities must publish all services available to support disabled children, and their families in the area. This is called a ‘local offer’. It covers education, health and social care services.

Find your local offer.

What services and support may be available

The services available vary between local authorities. They may include:

• daycare facilities for children under 5 and not yet at school
• short break services and holiday play schemes
• financial help
• care at home
• advice, guidance and counselling
• social, cultural or recreational activities
• sport and leisure support
• family centres
• some home aids and minor adaptations, such as hand rails
• transport help, such as a disabled parking spot or local transport services
• laundry facilities

How to get support for your child

Contact your local authority to ask for a needs assessment for your child. A member of the team will talk to you face to face or on the phone to assess your child’s and family’s needs.

The assessment should consider what’s needed to make daily life easier. You will then get recommendations for services and support. You can ask for a review if something’s missing, such as a bathing aid.

Carer's support for parents

The local authority can also provide support services for parents, such as respite care.

Ask for a carer’s assessment as well as a needs assessment for your child.

Read about finding respite care.

Agrontota

Thanks

April2018mom

Hello and welcome to the community 

My son does not walk independently either. Email your local council to ask for a assessment of need. The outcome of the meeting will be a report detailing recommendations on appropriate services and support. If they are not providing what is needed speak up.
We are also starting the process of getting our son what he needs to be independent. You might also want to look at this website for more information on the process- I found it quite useful https://www.nhs.uk/conditions/social-care-and-support-guide/introduction-to-care-and-support/
A member of the team should then contact you for more information on your child. Trust your gut feeling and make sure that you have your questions answered as well. My son’s amazing social worker was a walking mine of information for us. She helped me out with my application for adapted equipment for DS last year. Mainly we need specialised equipment rather than trained professionals supporting him in the community. I need a break from looking at application forms however and answering questions about his disability though. 

Agrontota

Thank you four your advice