• Care coordinated by key clinician (hospital or community paediatrician or GP)
• Management of learning and behaviour: Paediatric MDT assessment for developmental delay, ASD/ADHD and complex behavioural patterns, educational support where required.
• Investigations that might be indicated in individual patients: MRI brain scan.
• Referrals and ongoing surveillance that may be required: neurology for seizures and movement disorders; dietician for feeding issues due to hypotonia; ophthalmologist for possible vision problems.