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Symptoms
By Mayo Clinic staffSymptoms of Rett syndrome vary from child to child. Some babies show signs of the disorder from birth with no period of normal development. Others have milder symptoms and may retain the ability to speak. And some children have seizures along with other symptoms of Rett syndrome.
Rett syndrome is commonly divided into four stages:
- Stage I. Signs and symptoms are subtle and easily overlooked during the first stage of Rett syndrome, which starts between 6 months and 18 months of age. Babies in this stage of Rett syndrome may show less eye contact and start to lose interest in toys. They may also have delays in sitting or crawling.
- Stage II. Starting between ages 1 and 4 years, children with Rett syndrome gradually lose the ability to speak and to use their hands purposefully. Repetitive, purposeless hand movements — wringing, washing, clapping or tapping — begin during this stage. Some children with Rett syndrome hold their breath or hyperventilate and may scream or cry without provocation. It's often difficult for them to initiate movement. Slowing of head growth usually is noted during this stage.
- Stage III. The third stage is a plateau that usually begins between the ages of 2 and 10 years and can last for years. Although problems with mobility continue, behavior may improve. Children in this stage often cry less, aren't as irritable, and may show an improvement in alertness, attention span and nonverbal communication skills. Many people with Rett syndrome remain in stage III for the rest of their lives.
- Stage IV. The last stage is marked by reduced mobility, muscle weakness and scoliosis — an abnormal curvature of the spine. Understanding, communication and hand skills generally don't decline further during this stage. In fact, repetitive hand movements may decrease. Although sudden death in sleep can occur, most people with Rett syndrome live into their 40s or 50s. They usually need care and assistance throughout life.
When to see a doctor
Because symptoms of Rett syndrome can be subtle in the early stages, parents should be alert for changes in a child's behavior, especially lack of eye contact or loss of interest in normal play. If you notice these signs, consult your child's doctor right away.
