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