RESCARE
Call our Helpline
Donate to Rescare
The Society for Children and Adults with Learning Disabilities and their Families
Exact matches only
Search in title
Search in content
Search in posts
Search in pages

 
Rescare on Facebook
Rescare on Twitter
Contact Us
RESCARE
Call our Helpline
Donate to Rescare
Rescare on Facebook
Rescare on Twitter
Contact Us

10925188_IFConsultancy_v2

The Society for Children
and Adults with Learning
Disabilities and their Families

10925188_IFConsultancy_v2
15231690_IFConsultancy_v2

Make a

Donation

Make a donation today and help Rescare

15231690_IFConsultancy_v2
13971694_IFConsultancy_v2

Supporting Campaigns

Lobbying MPs, ministers & agencies on legislation and policy changes
13971694_IFConsultancy_v2
13971694_IFConsultancy_v2

Helpline: 0161 477 1640

Here to help with questions relating to learning disability and its impact on family carers

13971694_IFConsultancy_v2

SWAN Children -‘I just want to know what’s wrong with my child’

The issues around securing a diagnosis for your child will be familiar to many parents. Most (including the author of this post) will have an anecdote or horror story to tell about the process.

I was reminded of the problems around diagnosis by an article by Chris Evans in the i newspaper on 22nd May, also available online via this link.

It has headlined ‘I just want to know what’s wrong with my child’, with the sub-headline ‘Having a baby with serious health problems is heartbreaking, but what can you do when no doctor is able to say what’s wrong?’

The article explained the plight of the 6000  children born each year in the UK stuck in this position with undiagnosed genetic conditions, who ‘have fallen through the cracks of the medical world, leaving their parents to face an unknown treatment path’.

These are the SWAN children – who present complex  symptoms of physical and/or intellectual impairments. SWAN stands for Syndrome Without A Name.

The article (well worth reading in full) described various ‘categories’ of Swan children, including  children who are physically generally fine but have profound learning disabilities and sensory processing disorders, often non-verbal.  The mother of a 13-year-old boy spoke about her son: “He can’t speak or sign, so it’s hard to know what’s going on All of his problems are around profound learning disabilities, He’s had numerous tests and investigations for syndromes which he appears to look like and displays similar symptoms, but they’ve all been negative. Jacob has some autistic-like behaviour, but is not classically autistic. He can’t speak, point, sign or make gestures, so it’s hard to know exactly what’s going on. Every time a symptom pops up, we have to go back to the paediatrician and work it out together, with other professionals, to find the right way to treat it.”

The article alerted me to the existence of the specialist charity SWAN UK, which essentially aims to inform and support the parents and siblings of Swan children, but whose website www.undiagnosed.org.uk addresses a range of issues around diagnosis which are more widely relevant.   (Reminder to self: add SWAN UK to Rescare’s Rescources Directory!)

RESCARE

The Society for Children and Adults
with Learning Disabilities and their Families

 

Rescare on Facebook
Rescare on Twitter
Contact Us
Rescare on Facebook
Rescare on Twitter
Contact Us
Exact matches only
Search in title
Search in content
Search in posts
Search in pages
Registered Office:
Steven Jackson House
31 Buxton Road
Heaviley
Stockport
SK2 6LS

Website Design and Hosting by IF Consultancy

Rescare - Registered Charity no. 1112766