What are the symptoms of Rett syndrome?

In many cases, symptoms do not start to present until the child reaches twelve months of age; during this period of time development appears to be normal; however, from around 12-24 months of age, regression starts to occur and symptoms become increasingly obvious. Common symptoms include:

  • A plateau of development from 12 months onwards
  • Slow growth or a lack of growth in the circumference of the head after 2 months of age
  • Stiffness and poor posture
  • A regression of development of skills, including reduced movement and speech
  • Development of repetitive hand movements, including tapping, clapping and crossing the fingers
  • Irregular breathing patterns, including holding the breath, hyperventilating and swallowing large amounts of air
  • Muscle stiffness and weakness, which gets worse as the condition develops
  • Epilepsy: around 50 percent of people with Rett syndrome suffer from epilepsy
  • Teeth grinding
  • Scoliosis (curvature of the spine)
  • Restricted growth

Symptoms tend to develop in a pattern according to the age of the child and the stage of the condition; these stages are outlined below:


During stage 1, which occurs between 6 and 18 months, many children may appear to be developing normally and symptoms may be overlooked. Common symptoms during this stage may include a lack of interest in toys and activities and slow development.


Between the ages of 1 and 4 most children with Rett syndrome begin to lose the ability to communicate effectively and they start to use their hands for repetitive actions such as tapping and clapping. During this time, children may also start to experience breathing difficulties.


This stage is commonly known as the plateau; during this stage, which can begin anytime between the ages of 2 and 10, the child seems to be more settled and their behaviour tends to be calmer and less irritable. Many children will stay in this stage for the rest of their lives.


During this stage, the muscles continue to weaken and mobility decreases significantly; scoliosis may also develop during this period of time. Communication skills don’t tend to deteriorate any further and although patients will require a lot of help, many survive well into their 40’s or 50’s.

Rett Syndrome

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