What is Rett Syndrome?

Day2DayParenting Child Development, Special Needs Diagnoses

Rett Syndrome is a childhood neurodevelopmental disorder that affects females almost exclusively.

What is Rett Syndrome?

Loss of muscle tone is usually the first symptom. Other early symptoms may include problems crawling or walking and diminished eye contact.

As Rett Syndrome progresses, the child loses purposeful use of her hands and the ability to speak. Compulsive hand movements such as wringing and washing follow the loss of functional use of the hands.

The inability to perform motor functions is perhaps the most severely disabling feature of Rett Syndrome, interfering with every body movement, including eye gaze and speech.

Treatment of Rett Syndrome

There is no cure for Rett syndrome.

Treatment for the disorder is symptomatic, focusing on the management of symptoms, and supportive care. Medication may be needed for breathing irregularities and motor difficulties, and antiepileptic drugs may be used to control seizures.

Occupational therapy, physiotherapy, and hydrotherapy may prolong mobility. Some children may require special equipment and aids such as braces to arrest scoliosis, splints to modify hand movements, and nutritional programs to help them maintain adequate weight. Special academic, social, vocational, and support services may also be required in some cases.

The Prognosis of Rett Syndrome

The course of Rett Syndrome, including the age of onset and the severity of symptoms, varies from child to child. Despite the difficulties with symptoms, most individuals with Rett Syndrome continue to live well into middle age and beyond. Because the disorder is rare, very little is known about long-term prognosis and life expectancy.

Where Can I Get More Information?

International Rett Syndrome Foundation
4600 Devitt Drive
Suite 2B
Cincinnati, OH 45246
Phone 513-874-3020
800-818-RETT (7388)
E-mail [email protected]
Website: www.rettsyndrome.org

Easter Seals
230 West Monroe Street
Suite 1800
Chicago, IL 60606-4802
Phone 312-726-6200 or 800-221-6827
Fax 312-726-1494
E-mail [email protected]terseals.com
Website: www.easterseals.com

National Institute of Child Health and Human Development (NICHD)
National Institutes of Health, DHHS

31 Center Drive
Rm. 2A32 MSC 2425
Bethesda, MD 20892-2425
Phone 301-496-5133
Fax 301-496-7101
Website: www.nichd.nih.gov
This material has been prepared by the National Institute of Neurological Disorders and Stroke or any other federal agency.

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