Rett Syndrome Symptoms

A girl with Rett syndrome will start developing normally. She will smile, move, and pick items up with her fingers. But by 18 months of age, the developmental process seems to stop or reverse itself. The age of onset and the severity of symptoms can vary. There are four stages. Symptoms include:

Stage I: Early Onset Stage

• Age: 6 to 18 months
• Duration: months

Symptoms may include:

• Less eye contact with parents
• Less interest in toys and play
• Handwringing
• Slow head growth
• Calm, quiet baby

Stage II: Rapid Destructive Stage

• Age: 1 to 4 years
• Duration: weeks to months

Symptoms may include:

• Small head
• Intellectual Disability
• Loss of muscle tone
• Inability to purposely use hands
• Loss of (previous) ability to talk
• Repeatedly moving hands to mouth
• Other hand movements, such as clapping, tapping, or random touching
• Hand movements stop during sleep
• Holding breath, gaps in breathing, taking rapid breaths
• Irregular breathing stops during sleep
• Teeth grinding
• Laughing or screaming spells
• Decreased social interactions
• Irritability
• Trouble sleeping
• Tremors
• Cold feet
• Trouble crawling or walking

Stage III: Plateau Stage

• Age: preschool through school years
• Duration: years

Symptoms may include:

• Difficulty controlling movement
• Seizure Disorder
• Less irritability and crying
• Communication may improve

Stage IV: Late Motor Deterioration Stage

• Age: when stage III ceases, can be anywhere from age 5 to 25
• Duration: up to decades

Symptoms may include:

• Decreased ability to walk
• Muscle weakness or wasting
• Stiffness of muscles
• Spastic movements
• Scoliosis (curvature of the spine)
• Breathing trouble and seizures often decrease with age
• Puberty usually begins at the expected age

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