Down Syndrome Regression Disorder Clinic

About the Down Syndrome Regression Disorder Clinic

At the Down Syndrome Regression Disorder (DSRD) Clinic at Children’s Hospital Colorado, we care for children and young adults with Down syndrome who have experienced a significant loss of developmental skills and developed new thinking, mental health or brain-related symptoms. These changes often don’t have a clear cause and can be very stressful for both the individual and their family, impacting quality of life greatly. We know it can be hard to figure out the right tests and treatment options for these symptoms. That’s where we come in.

Why choose us for evaluation and care of Down syndrome regression disorder

Our clinic provides a comprehensive evaluation of regression symptoms through visits with our psychiatrist, psychologist, neuroimmunologist and neurodevelopmental and Down syndrome specialists.  We will discuss possible causes (including Down syndrome regression disorder), recommend diagnostic testing if needed and work with you to determine the right treatment. We work as a team with your family, your primary care providers and other local specialists. Our experts also share the most up-to-date information on this disorder with families. Through our participation in groundbreaking clinical trials and research studies, we’re able to explore new treatment options and improve our understanding of the causes of this disorder.

Children's Colorado is one of the few centers in the United States to offer a multidisciplinary clinical evaluation and treatment of DSRD. Our team has extensive experience evaluating and treating this complex disorder, and we lead clinical trials that address the most vital questions regarding DSRD.

Who we treat at the DSRD Clinic

We treat kids and young adults with Down syndrome who have experienced a significant loss of developmental skills and are showing new cognitive, psychiatric and neurologic symptoms.

What to expect before your visit to the DSRD Clinic

Before your visit, we’ll contact you and ask you to fill out an intake form to provide information on your referral, current symptoms, previous diagnostic testing and local provider. You may be placed on a waitlist, but we will call you to schedule an appointment when one becomes available. For families from outside Colorado or with certain insurance plans, we may need a primary care referral and insurance authorization.

What to expect during your visit to the DSRD Clinic

You’ll first meet with the clinic’s medical assistant and nurse to review medications and major questions for the clinic visit. Our doctors take turns meeting with you and your family in teams of two to learn more about your child’s symptoms, prior testing and treatments. We then perform a physical exam and answer any questions. You’ll see multiple teams in this fashion. The providers will all meet together to discuss a care plan. Based on the medical history and physical exam, we will provide recommendations for next steps, which may include additional testing or a multidisciplinary treatment plan. The entire clinic visit can last up to 3 hours.

What happens after a visit to the DSRD Clinic?

After your visit, you can expect that:

• Our providers will send you, your primary care provider and any local specialists (neurologists, psychiatrists or other provider) a letter with detailed recommendations for additional tests and treatment.
• We are available to discuss our recommendations with these providers and specialists, and they may ask us questions to learn more about our recommendations.
• If appropriate, we may order or proceed with diagnostic testing at Children’s Colorado.
• Depending on your location and recommendations, you may have follow-up visits with individual members of our team or start treatments with these providers.

Contact the DSRD Clinic

Contact us to make an appointment at the DSRD Clinic at 720-777-6750. Primary care providers or specialists with questions about referrals can contact us at DSRDClinic@childrenscolorado.org.