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The goal of our Rett Clinic is to provide the best consultative care and therapeutic advice for babies, kids and teens 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.
The Rett Clinic at Children's Colorado was established in 2011 thanks to a generous gift from the Rocky Mountain Rett Association. Many doctors and specialists come together to provide coordinated care and convenience for the child and family (about 14 providers are at the first appointment).
We’re located in the Multidisciplinary Clinic at Children’s Colorado, which means that the doctors and specialists come directly to the patient and family (and not the other way around) to provide streamlined care for children with complex needs. No other clinic in the world provides this level of coordinated care at the same place at the same time.
Our team has developed a wealth of experience and knowledge about Rett and Rett-like disorders, and we’re recognized as national and international leaders in the field. We collaborate with Rett clinics across the world, and we strive to develop and provide the most up-to-date care.
Outside of the Rett Clinic at Children’s Colorado, our doctors also perform research to find the best ways to care for our patients. Our research includes participating in clinical trials for new drugs for Rett and Rett-like disorders.
Our doctors and specialists are not meant to take the place of local providers, rather to provide advanced care and advice on a complicated and rare condition. It is our goal to continue to allow families to maintain their original medical home.
We have also been recognized as an International CDKL5 Foundation Center of Excellence and a Center of Excellence by RettSyndrome.Org.
Because of its genetic nature, there is no cure for Rett syndrome at this time. Our treatments are designed to help alleviate your child’s symptoms and create the best possible quality of life.
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.
We use physical, occupational and speech therapy 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.
Rettsyndrome.org named Children’s Hospital Colorado a Clinical Research Center of Excellence in 2016. We have also been recognized as an International CDKL5 Foundation Center of Excellence to assist our research efforts. Learn more about our tests and treatments for Rett syndrome and our Neuroscience Institute’s research.
Before your appointment at the Rett Clinic, you must provide us your child’s medical records. These records must demonstrate the presence of Rett syndrome or a Rett-like condition, which should include prior genetic testing results. Our nurse coordinator will help you get these records.
These records are then reviewed by the multidisciplinary team one week before your visit. As a multidisciplinary clinic, we bring together about 14 sub-specialty providers and therapists for a morning or 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 a half day, we encourage families to bring your child’s toys and favorite snacks. If applicable, bring your child’s specific braces or adaptive devices, especially communication devices.
Please note that the Rett Clinic is not a diagnostic clinic. If you think your child may have Rett syndrome or a Rett-like condition, please contact us so that we can direct you to the right place.
After your appointment, you and your primary care provider will receive a detailed letter with recommendations for treatment, tests 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 help your child complete the annual health maintenance recommendations.
Learn more about the signs, symptoms, tests and treatment for Rett syndrome.