Rett Syndrome Clinic
The UCEDD at Children's Hospital Los Angeles Rett Syndrome Clinic is one of only two such clinics in California and one of only a few centers in the United States that specializes in the diagnosis and comprehensive care of children and youth with Rett syndrome. The Rett Syndrome Clinic and is also an interdisciplinary training clinic, staffed by faculty from the Leadership Education in Neurodevelopmental Disabilities (LEND) Program which introduces new professionals to the condition and helps prepare for a new generation of providers to care for individuals with Rett Syndrome.
We see children and youth from birth to age 21.
What is Rett Syndrome?
Rett Syndrome (RTT) is a unique neurodevelopmental disorder that begins to show its affects in infancy or early childhood. It is seen almost exclusively in females, although it can occur rarely in boys. It is found in all racial and ethnic groups throughout the world.
Age of Onset
The age when RTT begins and the severity of different symptoms may vary. The child with RTT is usually born healthy and shows an early period of apparently normal or near normal development until 6-18 months of life, when there is a slowing down or stagnation of skills.
A period of regression then follows when the child loses communication skills and purposeful use of her hands and slowing of the normal rate of head growth become apparent. Soon, stereotyped hand movements and gait disturbances are noted. Other problems may include disorganized breathing patterns which occur when she is awake and seizures.
There may be a period of isolation or withdrawal when the child is irritable and cries inconsolably. Over time, motor problems may increase, while interaction and communication, especially with eye gaze, seizures and irregular breathing may improve.
Most individuals with RTT require maximum assistance with every aspect of daily living.
* This information has been adapted from www.rettsyndrome.org
Core Services
Services in our Rett Clinic include an interdisciplinary team that can provide evaluation and consultation in the following areas:
- Seizures
- Sleep and breathing disturbances
- Behavioral concerns
- Nutrition and feeding issues
- Motor disabilities
- Communication challenges
Core Team Members
Our Core Team consists of the following disciplines:
- Developmental Pediatrics
- Family Support
- Neurodevelopmental Pediatrics
- Neurology
- Nursing
- Nutrition
- Occupational Therapy
- Physical Therapy Psychology
- Social Work
- Speech and Language Pathology
- Other specialists are available for consultation as needed
Clinic Background
The Rett Syndrome Clinic at the University of Southern California, Center for Excellence in Developmental Disabilities at our hospital began with a request from the parents from the Southern California Chapter of the International Rett Syndrome Foundation (IRSF) because they had to travel too far to find care for their daughters with Rett syndrome. They asked the UCEDD to develop a Rett clinic drawing on their expertise in interdisciplinary care for individuals with developmental disabilities.
In the News
Univision: ¿Qué es el 'Síndrome de Rett'?
Insurance
We accept most insurance plans, including California Medi-Cal. We are committed to caring for all individuals with Rett Syndrome regardless of their financial circumstances.
