Specialties & Conditions Down Syndrome Clinic
The Down Syndrome Clinic, a subspecialty program within the Division of Developmental and Behavioral Pediatrics, offers specialized services as well as interdisciplinary and comprehensive evaluations for children with Down syndrome and their families, providing care from birth through late adolescence. During your visit, you can expect to meet with a physician as well as a care team of experts from other therapy disciplines. The team is structured to meet the needs of your child and may grow over time. Clinic staff also work closely with children, parents, medical specialists, community physicians, community-based parent groups and educators to best care for and support your child before, during and after your initial visit.
A world where all individuals with Down syndrome are fully included and integrated into society and seen as valued members of our communities.
A world where all individuals with Down syndrome are provided with the support needed to reach their full potential and engage at the highest possible capacity in family, school and community life.
To evaluate and offer evidence-based care recommendations for each unique patient with Down syndrome according to his or her specific needs, focusing on medical comorbidities, cognitive and neurodevelopmental concerns, behavioral and mental health needs, and educational, vocational, and social challenges. To promote education about the issues that are important to individuals with Down syndrome, ranging from prenatal testing and counseling to the myriad of medical and developmental concerns that may arise throughout the lifespan. To promote research endeavors geared towards better understanding the medical and developmental consequences of trisomy 21, with the ultimate goal of positively impacting the lived experience of individuals with Down syndrome.
With medical advances, children with Down syndrome survive and thrive well into adulthood and beyond. While the initial primary focus tends to be on assuring that all medical issues are being appropriately addressed during infancy, as children with Down syndrome age, they may experience varying degrees of challenges with language development, hypotonia and gross motor delays, and cognitive or learning issues. Some children may also experience secondary impairments due to problems with sleep, behavioral and emotional issues, or other health conditions. Our team is here to assist families in assuring that supports are in place to address these challenges and, and to help with navigation through the complex health care, education, and early intervention services. We can provide evaluation, consultation, and treatment recommendations in a variety of areas:
We have several different visit types to ensure that individuals with Down syndrome receive age appropriate care.
In collaboration with The Chicago Institute for Fetal Health through Ann & Robert H. Lurie Children’s Hospital of Chicago, we offer confidential prenatal consultation for families who receive a prenatal diagnosis of Down syndrome. Parents who receive a prenatal diagnosis are given an opportunity to meet and talk with a developmental pediatrician about Down syndrome and ask questions.
Whether or not you opt for a visit at The Chicago Institute for Fetal Health, we welcome you to join the clinic after the baby is born. Please contact the Lurie Children’s Division of Developmental and Behavioral Pediatrics for more information on the Down syndrome clinic.
Families of newborns or young infants are welcome to come in for a "new baby visit" with one of our providers, and if desired, with a physical therapist as well. The physician will review medical history, discuss development, and answer any questions the family may have.
This clinic for children from 12 months to 5 years provides a comprehensive evaluation using an interdisciplinary team approach, usually with speech, occupational, and physical therapy. These visits are held on Monday afternoons several times a month. This consists of a two hour appointment during which the physician and therapist team evaluates the child at once. Children are typically seen in this clinic once to twice yearly.
For children ages 5 to 18 years, we offer an individualized approach. We provide a comprehensive developmental pediatrics/neurology visit on an approximately annual basis or more often as needed depending on the child’s needs. We have several designated relationships with subspecialty providers who have a special interest in Down syndrome, so the referral process for this is straight-forward. We can also work to coordinate same-day visits or co-visits with therapists in our division. This is individualized for each family based on individual needs and desires. We work with each family to make their visits as efficient and accommodating as possible.
During the visit to the Down syndrome clinic, your physician might discuss with you the need for other specialty providers to be involved in your child’s care. If your child is followed by a specialist elsewhere, you can certainly continue care with that provider. The following is a partial list of providers that are available through Lurie Children's:
Please call 1.800.543.7362 (1.800.KIDS DOC) to initiate all referrals into the Down syndrome clinic. Once the referral has been entered, then the office staff will reach out to you to complete questionnaires. Appointments are scheduled after questionnaires have been completed. Prior to your appointment, we also encourage you to sign up for MyChart.
To help you prepare for your child's appointment with the Down Syndrome Clinic, download our informational sheet.
Your support is vital in helping us continue to make a difference in the lives of patients and families. Lurie Children’s relies on philanthropic funding to enhance its programs, services and research for children. To learn more, please e-mail the Ann & Robert H. Lurie Children’s Hospital of Chicago Foundation at foundation@luriechildrens.org or call 312.227.7500.
