Down Syndrome

The Down syndrome program at Riley Hospital for Children at Indiana University Health provides specialized care for children with Down syndrome. We provide advice and support for families while ensuring each child has the best care available to grow and develop to his or her full potential.

There is wide variability in the mental abilities, behavior and physical development of people with Down syndrome. Informed and supportive families, therapists, school and community personnel help people with Down syndrome reach their highest developmental capability.

Children with Down syndrome may have special medical problems including:

HOW THE DOWN SYNDROME PROGRAM WORKS

When your child is seen in our Down syndrome program he or she will get a coordinated multidisciplinary evaluation. Your child will be seen by a board certified pediatrician, who specializes in children with special developmental needs. A nurse practitioner, dietitian, speech therapist and social worker are also part of the team. Other pediatric subspecialists available for consultation are from the cardiology, ENT, endocrinology, dental, ophthalmology, audiology, orthopedics, pulmonary, occupational therapy, physical therapy, psychology and psychiatry departments. We work collaboratively with the child’s primary care physician and will send a report of the visit to him or her.

TREATMENT OBJECTIVES

  • Provide specialized and personalized care that individuals with Down syndrome require
  • Provide current information on health-related services for persons with Down syndrome
  • Link families with community services
  • Educate people about the strengths and abilities of individuals with Down syndrome

TRANSITION FROM CHILD TO ADULT CARE

The developmental pediatricians at Riley Hospital for Children at IU Health work with families to help transition from child care to adult care when the time comes. Conversations about this transition begin early so that the planning and transition itself can be as smooth as possible. The goal is to enable patients to move toward independence and to ensure that they have the resources for optimal decision making.

This transition typically happens sometime between the ages of 18 and 25. Children, Youth and Adolescents with Conditions of Childhood (CYACC) aids in this transition.

RESOURCES

Camp Hi-Lite for Children with Down Syndrome

Every summer, Bradford Woods facilitates Camp Hi-Lite. This one-week camp is exclusively for children with Down syndrome from age 8 to 22. They serve 70 to 75 children every summer. Campers experience traditional camp activities in a fully accessible environment. The camp allows participants to increase their social skills and reach new levels of independence.

Other Resources

Down Syndrome Indiana: The goal of Down Syndrome Indiana is to enhance the lives of those with Down syndrome. This organization provides support for new parents of a child with Down syndrome. They also provide information for healthcare professionals and educators.

National Down Syndrome Society: This resource provides information for new and expectant parents, as well as doctors and educators who interact with individuals with Down syndrome.

National Down Syndrome Congress: This website offers information for new and expectant parents, as well as other educational resources relating to Down syndrome.

Dads Appreciating Down Syndrome (D.A.D.S.): Down Syndrome Indiana currently hosts a D.A.D.S. meeting in Indianapolis. This support group is for any dad — (or grandfather, brother, uncle, teacher or physician) — who cares for someone with Down syndrome.

First Steps Indiana: First Steps Indiana works with Indiana families who have infants and toddlers with developmental delays or disabilities. They provide access to early intervention services close to home for families who need them.

American Academy of Pediatrics Guidelines for Health Supervision for Children With Down Syndrome: This document lists guidelines for pediatricians who care for patients with Down syndrome from infancy through early adulthood.

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