How is Rett syndrome treated?
Because of its genetic nature, there is no cure for Rett syndrome at this time. At Children’s Hospital Colorado, our treatments are designed to help alleviate your child’s symptoms and to create the best possible quality of life.
Some treatment approaches include medications to address possible seizures, gastroesophageal reflux, constipation, breathing problems and mood imbalances.
Feeding problems may also occur, requiring some patients to need supplemental food from a feeding tube. Scoliosis (a curved spine) may also require orthopedic interventions like braces or surgeries.
Physical, occupational and speech therapy is also used to address motor, communication, sleep and behavioral difficulties. Although no cure is available, these supportive treatments help most patients adapt to the symptoms of Rett syndrome.
Why choose Children’s Hospital Colorado?
The Rett Clinic at Children's Colorado was established in 2011 thanks to a generous gift from the Rocky Mountain Rett Association. Because so many specialties are housed under the same roof at Children’s Colorado, we can be a total care home for children with Rett syndrome.
We have also been recognized as an International CDKL5 Foundation Center of Excellence to assist our research efforts.
About the Rett Clinic
The goal of the Rett Clinic is to provide the best consultative care and therapeutic advice for individuals with Rett syndrome and genetically related disorders. We provide up-to-date information on Rett syndrome to parents, physicians, therapists and care providers. We also participate in groundbreaking clinical research trials and work as a team with your family and primary care providers.
What to expect at your appointment
As a multidisciplinary clinic, we bring together 14 sub-specialty providers and therapists for an afternoon to provide a comprehensive evaluation for your child. Our providers work closely together and may refer children for additional help when needed.
During your visit, you may see providers from the following sub-specialties:
Family networking and refreshments are provided by the Rocky Mountain Rett Association to help make your visit enjoyable. Because your appointment will last most of the afternoon, we encourage families to bring your child’s toys and favorite snacks.
Next steps after your appointment
After your appointment, you and your primary care provider will receive a detailed letter with recommendations for treatment, test and therapies from our Rett Clinic providers. Our nurse coordinator will work with you and your primary care provider to complete the recommendations listed.
Even though your child may attend the Rett Clinic once a year or every other year, our nurse coordinator will stay in contact with your family to be a resource and assist in completing the annual health maintenance recommendations.
How to make an appointment at the Rett Clinic:
Please have your primary care provider or Children’s Colorado doctor contact the Rett Clinic at 720-777-4363 or email firstname.lastname@example.org.