Rett Clinic

About the Rett Clinic

The goal of our Rett Clinic team is to provide the best advanced care and treatment advice for people of all ages with Rett syndrome and genetically related disorders.

We provide up-to-date information on Rett syndrome and genetically related disorders to parents, physicians, therapists and care providers. We also participate in groundbreaking clinical research trials and work as a team with your family, primary care providers and other specialists from your medical home.

Who we treat at the Rett Clinic

We treat patients with the following conditions:

• Rett syndrome
• CDKL5 deficiency disorder
• FOXG1 syndrome
• MECP2 duplication syndrome (MECP duplication syndromes, male-Rett encephalopathy and others)

Services we offer at the Rett Clinic

Patients who come to our clinic have already been diagnosed with Rett syndrome, CDKL5 deficiency disorder, FOXG1 or a MECP2-related syndrome. Contact us at 720-777-4363 or rettclinic@childrenscolorado.org if you have questions about whether or not your child has a diagnosis or you need help in obtaining a diagnosis. The Rett Clinic is not a diagnostic clinic.

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.

Managing symptoms related to Rett-related disorders

Some treatment approaches include medications to address possible seizures, movement problems, gastroesophageal reflux, constipation, breathing problems, irregular heartbeat 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.

Rett syndrome therapy

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.

Research on Rett syndrome and related disorders

The International Foundation for CDKL5 Research and Rettsyndrome.org have both recognized Children’s Colorado as Clinical and Research Centers of Excellence. Learn more about our tests and treatments for Rett syndrome and our Neuroscience Institute’s research.

Why choose the Rett Clinic at Children’s Colorado?

The Rett Clinic at Children's Colorado was established in 2011, thanks to a generous gift from the Rocky Mountain Rett Association (RMRA). We continue to operate and serve our families and patients with continued, generous support from RMRA, International Foundation for CDKL5 Research (IFCR) and Children’s Colorado. Many doctors and specialists come together to provide coordinated care and convenience for your child and family. About 14 providers are present at the first appointment.

Children’s Colorado has also been designated an International Rett Syndrome Foundation (IRSF)’s Center of Excellence, which means our team has been recognized for our continued dedication to providing best-in-class clinical care for Rett syndrome.

We’re located in the Multidisciplinary Clinic at Children’s Colorado, which means that our doctors and specialists come to see our patients and families in one place. This enables us 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.

Proven leaders in the field of Rett disorders

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 other programs and practitioners from across the world, and we strive to develop and provide the most up-to-date care based on research and care guidelines.

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, CDKL5 deficiency disorder and genetically related disorders. Search for the latest research on the clinical trials website.

Partnering with your pediatrician to provide the best care

Our doctors and specialists are not meant to take the place of local providers and specialists. Instead, we provide advanced care and advice on a complicated and rare condition. It is our goal to allow families to continue to go to their original medical home while we walk alongside their healthcare team to provide support.

What to expect from your visit to the Rett Clinic

Before your child’s appointment at the Rett Clinic, we will need 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 obtain a list of these records and tell you how to send them to our clinic.

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.

A team of pediatric experts that comes together for your child

During your visit, you may see providers from the following sub-specialties:

• Neurology
• Rehabilitation
• Developmental pediatrics
• Pulmonary
• Cardiology
• Orthopedic surgery
• Genetics
• Gastroenterology
• Behavioral psychology
• Nutrition
• Physical therapy
• Speech therapy
• Nursing
• Social work
• Occupational therapy
• Adolescent gynecology
• Palliative care (Reach Team)

Family networking and refreshments are provided by RMRA and IFCR to help make your visit enjoyable. Because the appointment will last half a day, we encourage you to bring your child’s toys and favorite snacks. If applicable, bring your child’s specific braces or adaptive devices, especially communication devices.

Next steps after your Rett Clinic appointment

After your child’s appointment, our Rett Clinic providers will provide you and your primary care provider with a detailed letter of recommendations for treatment, tests and therapies. Our nurse coordinator will work with you and your child’s 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.

Contact the Rett Clinic

Families and providers can contact the Rett Clinic at 720-777-4363 or rettclinic@childrenscolorado.org.