Conditions + Treatments

Treatments for Rett Syndrome in Children

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Contact the Rett Syndrome Program

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.

Coping and support - Boston Children's resources for families:

  • A diagnosis of Rett syndrome can feel devastating. Every day, we work with children and families who give us great hope. You may find it helpful to talk not only with us, but also with the families of other children in our Rett Syndrome Program. In addition, there are several active organizations that offer information and support to families affected by Rett syndrome.
  • A wonderful resource at Boston Children's is the Augmentative Communication Program. Here, speech-language pathologists work with many of our patients to find creative, effective strategies for communication.
  • A key part of our program is the Parent Advisory Group. This group facilitates communication between families and our medical team. They help us disseminate information about new developments in the clinic, and we depend on them to give us feedback about what aspects of families' experiences at Boston Children's can be improved. We are grateful to them for the essential role they play in our program.
  • Some of the members of our Parent Advisory Group also serve as leaders in the Rett Syndrome Association of Massachusetts (RSAM) and the International Rett Syndrome Foundation.
  • The Experience Journal was designed by Boston Children's psychiatrist-in-chief David DeMaso, MD and members of his team. This online collection features thoughts, reflections and advice from kids and caregivers about going through cardiac disease, heart transplants and many other medical experiences.

For teens

  • Special support for teen girls: Girls with Rett syndrome can experience their own set of difficulties when they enter puberty. They may experience early-onset puberty or never go through puberty at all. Menstrual period may also be painful or difficult to manage. The Center For Young Women's Health offers the latest gender-specific information about sexual and emotional health.

Other resources

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.

  • The Rett Syndrome Association of Massachusetts (RSAM) is a nonprofit organization that provides support, education and information to families as well as to the medical and educational communities.
  • Rettsyndrome.org is dedicated to providing families with the latest medical information and support. It raises public awareness and advocates for those living with Rett syndrome. The IRTTF publishes The Rett Syndrome Handbook, an exhaustive guide for families and medical professionals.
  • The Rett Syndrome Research Trust is a nonprofit organization intensively focused on the development of treatments and cures for Rett syndrome and related MECP2 disorders.
  • This Rett Syndrome Information Page from the National Institute of Neurological Disorder and Stroke has information about the disorder and its prognosis, treatment and research.
  • Boston Children's is part of the Autism Consortium, a group of researchers, clinicians and families dedicated to accelerating research and enhancing clinical care for autism and related disorders including Rett syndrome.
  • This website on Autism, Asperger's syndrome and related disorders provides fact sheets for everyone affected by these disorders, whether directly or indirectly. There is an emphasis on practical strategies.

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.”
- Sandra L. Fenwick, President and CEO

Boston Children's Hospital 300 Longwood Avenue, Boston, MA 02115 617-355-6000 | 800-355-7944

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