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How Can Physio Help Children with Rett Syndrome?

or call us today at 0207 884 0374

Rett syndrome is a genetic disorder, which results in global developmental delay and begins in early childhood. It mostly affects girls and is rarely seen in boys. Children start to show symptoms around the age of 6-18 months. Symptoms include floppiness, abnormal hand gestures such as repeated flapping of hands, reduced social interaction, poor eye contact and decreased coordination. There is then a sudden rapid regression occurring between the ages of 1 and 4 years where either gradually or suddenly a child may develop problems communicating and learning.

Gradually over time a reduction in active movement continues and most children will lose the ability to walk, develop spasticity (tight muscles) in their legs and be at risk of developing a scoliosis, presenting with severe global developmental delay.  Some children (around 70%) will also develop epilepsy.

Most cases of Rett syndrome are caused by a gene mutation (found on the X chromosome). The gene affected makes a protein vital for brain development and the abnormality prevents nerve cells in the brain from functioning properly.  Most people with Rett syndrome have no family history of the disorder.

There is no cure for Rett syndrome though there is help available from healthcare professionals such as speech and language therapists, Occupational Therapists and physiotherapists. Epilepsy doctors can help manage seizures.

How can Physiotherapists Help?

  • Monitor your child’s musculoskeletal development, specifically spinal alignment and hip development, referring to orthopaedic doctors when required.
  • Promote gross motor skills and help with any manual handling difficulties as your child loses function.
  • Assess for postural management equipment such as seating.
  • Share information regarding community sports such as horse riding, hydrotherapy, and Rebound Therapy.
  • Promote strengthening and help maintain walking as much as possible using aids if required such as walking aids and orthoses/splints to help your child’s ankle and foot position.

Are you looking for a specialist physio to see your child? Contact us today on 0207 884 0374 or email

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