Rett Syndrome Program
About us
Our Rett Syndrome Program at Children’s Hospital Boston is the only specialist Rett syndrome program in New England. We care for more than 250 patients who have Rett syndrome and related disorders.
Diagnosing your child’s condition
Our specialists are leaders in evaluating and diagnosing children with Rett syndrome and related conditions. Children’s has played a key role in revising clinical criteria of Rett syndrome. We also have extensive diagnostic testing capabilities, including:
- genetic testing in the Children’s DNA diagnostic laboratory
- neurophysiological testing
- brain imaging
These tests can help us distinguish Rett syndrome from other neurological and developmental disorders that may have similar symptoms.
We also specialize in diagnosing and treating children with atypical or variant Rett syndrome and related disorders. While the vast majority of children with Rett syndrome are girls, boys can have related disorders, and we care for a number of boys in our Rett Syndrome Program.
Specialized treatment
The physical symptoms of Rett syndrome, such as seizures, gastrointestinal problems and musculoskeletal problems, can often be alleviated and managed. And various forms of behavioral and rehabilitative therapy are extremely effective in helping children learn and develop.
Our program brings together Children’s physicians and therapists who are experienced in caring for children with Rett syndrome. Their specialties include:
- Augmentative Communication
- Cardiology
- Dentistry
- Developmental pediatrics
- Endocrinology
- Gastroenterology
- Genetics
- Gynecology
- Neurology
- Neuropsychology
- Nutrition
- Orthopedics
- Physiatry
- Psychiatry
- Pulmonology
- Sleep medicine
You can learn more about the specialists on our team on the Meet our team tab.
We work closely with occupational and physical therapists, social workers and a nursing team to create the best possible treatment plan for your child. Our goal is to achieve the optimum health and well-being in our patients so that they can reach their maximum potential.
An important part of our program is helping our patients access resources that will help them learn. We offer specialized neuropsychological testing to identify your child’s individual learning skills, which is helpful in finding the right educational setting for her.
Our advisors
We view our program as a partnership between parents and clinicians. Our Parent Advisory Group plays an important role in the program. See the Resources for families tab to learn more about that group.
We work extensively with researchers studying the biology of Rett syndrome, and we are collaborating with these scientists to develop new treatments. You can learn more about our research on the Our innovative approach tab.
