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There are many ways you can help children and their families get the care they need.
We understand that a diagnosis of Rett syndrome can be extremely worrisome. You are probably wondering where to go from here and how to make sure your child receives the best possible care.
At Boston Children's Hospital, we take a family-centered approach to treatment. From your first visit, you'll work with a team of professionals who are committed to supporting all of your family's physical and psychosocial needs, including putting you in touch with other families with a child who has Rett syndrome, and connecting you to community and educational services. With the appropriate therapy, children with Rett syndrome can develop, learn, communicate and reach their fullest potential.
How do you care for children with autism spectrum disorders?
Autism spectrum disorders (ASDs) are complex conditions, and our understanding of them is evolving rapidly as researchers get more and more answers. Boston Children's brings together an array of specialists—including developmental behavioral pediatricians, child neurologists, psychologists and speech-language pathologists—to provide the multi-faceted assessments and care that children with autism spectrum disorders need. Along with experienced resource specialists, we are dedicated to providing the best possible care for your child and helping your family access the right educational approaches and therapies for her unique situation.
Is there a cure for Rett syndrome?
There's currently no cure for Rett syndrome and the symptoms of Rett syndrome can't be reversed. Since Rett syndrome follows a progressive course, it causes certain skills and abilities to deteriorate over time. Treatment for the disorder focuses on managing your child's symptoms, which can affect many different aspects of her health and development.
What treatment options are available?
In many cases, a child's physical symptoms of Rett syndrome can be alleviated and managed with physical therapy and speech therapy. Various forms of behavioral and rehabilitative therapy are also extremely effective in helping children learn and develop.
Do you prescribe medication to help manage her symptoms?
Yes, medications may be used to treat a child's seizures, muscle stiffness and anxiety.
How is your approach unique?
Generally, doctors' and researchers' approach to treating children with Rett syndrome is undergoing major shifts. Improved medical care is alleviating many of the physical complications, allowing patients to live longer and maintain a higher quality of life. We are learning that with appropriate therapy, children with Rett syndrome can develop, learn and communicate. Recent discoveries are offering hope that medical treatments might one day reverse the symptoms of Rett syndrome.
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 wellbeing in our patients so that they can reach their maximum potential.
An important part of our Rett Syndrome Program is helping children and families access resources that will help them learn and thrive. We offer specialized neuropsychological testing to identify your child's individual learning skills, which is helpful in finding the right educational setting for her.
Please note that neither Boston Children's nor the Rett Syndrome Program at Boston Children's unreservedly endorses all of the information found at the sites listed below.
Resources throughout Boston Children's
Boston Children's Center for Patients and Families offers information on the wide array of support services available to families at Boston Children's.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”