The Blue Bird Circle Rett Center at Texas Children's

Affiliated clinics Neurology Attention problems Brachial Plexus Neurofibromatosis Neurophysiology (neurological testing) Neurosurgery Physical medicine and rehabilitation

The Blue Bird Circle Rett Center specializes in the diagnosis, treatment and follow-up care of girls and women with Rett syndrome.

Medical Specialists are available to evaluate problems such as scoliosis, chewing/swallowing dysfunction, failure to thrive, gastroesophageal reflux,and motor dysfunctions. Parents must accompany their child for these evaluations and studies.

Rett syndrome is a genetic, neurodevelopmental disorder, seen primarily in females. It rarely occurs in males. Early developmental milestones appear normal, but between 6 and 18 months of age, there is a delay or regression in development, particularly affecting speech, hand skills and coordination. Most of those with Rett syndrome lose the ability to speak and have very limited purposeful hand skills.

A hallmark of Rett syndrome is repetitive hand movements that may become almost constant while awake. Other symptoms may include seizures, irregular breathing patterns, including breath holding, somatic growth failure and curvature of the spine. People with Rett syndrome are expected to have a long life expectancy. Women with Rett syndrome remain dependent on others to provide their basic needs. But with proper care and therapy, people with Rett syndrome can learn alternative means of communication, show distinct preferences and are very socially interactive.

An appointment with the Rett Center includes a comprehensive, multidisciplinary evaluation. Recommendations may be made for the child with Rett syndrome to be evaluated by two or more of the team specialists in The Blue Bird Circle Clinic for Pediatric Neurology and in the offices of associated center team members.

Learn more about Texas Children's Rett Center team of experts and what their roles in the care of our patients.

Therapy options for Rett syndrome patients
In our experience, these girls do best when they receive an aggressive, ongoing therapy program (including a summer program) consisting of physical, occupational, and communication therapy. We recommend that girls with Rett syndrome receive a minimum of 30 minutes, three times a week of physical, occupational and communication therapy. We recommend that girls with Rett syndrome receive a program of communication therapy that emphasizes non-verbal communication including eye gaze, picture boards, switches, computers, etc.

The goals of therapy are to promote ambulation, balance, and purposeful hand use; improve oromotor function; and to develop augmentative communication via eye gaze response or reaching to touch pictures/objects, switches, use of computers, etc. We have found hand or elbow splints useful in decreasing the girls' repetitive hand movements and promoting purposeful hand use. In addition, music therapy, hippotherapy and hydrotherapy are beneficial adjunctive therapies. Music therapy has shown to be beneficial as a motivator to promote purposeful hand use and communication via eye gaze. Both hippotherapy (horseback riding therapy) and hydrotherapy (swimming therapy) are beneficial in promoting movement and balance, and improving strength as well as providing enjoyment for the girls.

Reaching your child's health care provider at the center
For all new appointments for Rett evaluations, contact the nurse for The Blue Bird Circle Rett Center at 832-822-1781 (toll-free through operator at 1-800-364-5437, extension 2-1781). Or, contact the main administrative office at 832-822-7388 (toll-free at 1-888-430-7388) and ask the secretary to contact the necessary provider.

Emergencies
For neurological problems after clinic/office hours, or on weekends or holidays, call the Texas Children’s Hospital page operator at 832-824-2099. Have the operator page the Pediatric Neurology fellow on call.