Rett's Disorder

What is Rett's Disorder?

Rett syndrome is relatively rare, affecting almost exclusively females, one out of 10,000 to 15,000. After a period of normal development, sometime between 6 and 18 months, autism-like symptoms begin to appear. The little girl's mental and social development regresses—she no longer responds to her parents and pulls away from any social contact. If she has been talking, she stops; she cannot control her feet; she wrings her hands. Some of the problems associated with Rett syndrome can be treated. Physical, occupational, and speech therapy can help with problems of coordination, movement, and speech.

Scientists sponsored by the National Institute of Child Health and Human Development have discovered that a mutation in the sequence of a single gene can cause Rett syndrome. This discovery may help doctors slow or stop the progress of the syndrome. It may also lead to methods of screening for Rett syndrome, thus enabling doctors to start treating these children much sooner, and improving the quality of life these children experience.* [More Information]

*NIH Publication No. 01-4960. Rockville, MD: National Institute of Child Health and Human Development, 2001. Available [Here]

Common Characteristics of Rett's

There are several specific 'symptoms' from a list in the DSM-IV-TR related to these difficulties, that children must show in order to meet the criteria for Rett's disorder, some of which include [More Information]

Causes of Rett's

Rett syndrome is a condition caused by a gene mutation (MECP2) that occurs before birth. The discovery of the Rett syndrome gene was announced on October 1, 1999 by researchers at Baylor College of Medicine in Houston, Texas. [More Information]

Diagnosis of Rett's

Getting the MECP2 blood test is the first step. Your child’s doctor will look carefully at her early growth and development and will evaluate her medical history and physical and neurological status. In making the diagnosis, specialists rely on a RS Diagnostic Criteria Worksheet, which has been developed by the world’s foremost authorities in RS. Your daughter may fall into one of three categories [More Information]

Support Groups

The stress of illness can often be helped by joining a support group where members share common experiences and problems. [National Support area]