Rett Syndrome

What is Rett syndrome?

Rett syndrome is a developmental disorder that affects primarily girls. Like autism, Rett syndrome is termed a pervasive developmental disorder, which means that a child who has it fails to develop normally in a number of areas. The development of a child with Rett's appears normal at birth and for the first 5 months of life. The disorder occurs in about 6 of every 100,000 girls.

How does it occur?

The cause of Rett syndrome is unknown. It is probably a result of damage that occurs to normal genes before birth. Scientists are trying to find out exactly how the damage occurs in hopes that it can be prevented. It is not thought to be inherited. Because of the damage to these genes, some parts of the brain tend to be smaller than normal in people with Rett syndrome.

What are the symptoms?

Rett syndrome develops in stages. From birth to about 5 months of age, the development and head size of a child with Rett's appear normal. Symptoms after that include:

  • the child's head growth becomes slowed
  • loss of acquired hand skills
  • development of hand movements that look like hand washing or hand wringing
  • loss of desire to interact with others
  • development of jerky body movements and an abnormal gait
  • severely impaired ability to speak or understand what others say
  • seizures
  • severe mental retardation

How is it diagnosed?

The healthcare provider will examine the child and ask about her symptoms and medical history. The provider may order some tests. These tests may include a CT (computed tomography) scan, which produces images of the brain, and blood tests to rule out other medical conditions. The provider may refer your child to a psychologist or other qualified mental health professional for tests of overall intelligence and emotional development.

How is it treated?

A treatment plan for Rett syndrome may include medicine for some of the symptoms and physical and speech therapy to improve skills.

In many cases, families are unable to provide the necessary care for a child with Rett syndrome without help. In some cases, home healthcare may enable the child to keep living at home. In other cases, the child may be placed in a supervised living facility. Family counseling may help caregivers cope with the child's disorder.

How long do the effects last?

Rett syndrome is a progressive, lifelong, disabling condition. Most people end up in a wheelchair and live at least into their 40s.

What can I do to help my child?

Learn as much as you can about Rett syndrome. Your child's healthcare provider may be able to direct you to support groups or additional information.

Written by Psychiatric Professional Services, Inc.
Published by RelayHealth.
© 2009 RelayHealth and/or its affiliates. All Rights Reserved.