Caring for Individuals with Down Syndrome

American Academy of Pediatrics provides healthcare guidelines for individuals with Down syndrome from birth to 21 years of age.

Healthcare Guidelines for Pediatricians

American Family Physician provides healthcare guidelines for adults with Down syndrome.

Healthcare Guidelines for Adulthood

Helpful Information

Atlantoaxial Instability in Down Syndrome

Celiac Disease in Down Syndrome

Down Syndrome and Alzheimer’s

Dual Diagnosis Overview 

Dual Diagnosis Chart

Gastrointestinal Problems

Thyroid Booklet

What is Obstructive Sleep Apnea?

Current Research

DS-Connect is the Down syndrome registry.  This website allows information to be shared among families, patients, researchers, and parent groups.  Family members or individuals with Down syndrome are able to enter their health history and contact information into a confidential database.

Global Down Syndrome Foundation provides information on research grants for Down syndrome and the importance of research for individuals with Down syndrome.

Research Down Syndrome provides information about cognitive research on Down syndrome.

Stanford University is conducting a new research study on individuals with Down syndrome.  This research study is conducted by Dr. Ahmad Salehi.  The focus of this study is on a therapeutic strategy for intellectual disability in Down syndrome.

 

Webinars

All webinars were found on YouTube provided by the National Down Syndrome Society.

Aging and Down Syndrome with Dr. Julie Moran

Sexuality and Down Syndrome with Dr. Michelle Ballan

Super Nutrition for Children with Down Syndrome by NDSS

The Biology of Down Syndrome with Dr. William Mobley

 

Medical Professionals Packet

AAP – Heath Supervison – Children with Down Syndrome

Altered Expectations

Child Development

DS-Connect

Family Dynamics

Genetics

List of Hospitals with Packets

Medical Concerns

Presenting the Diagnosis

Resource List for the Medical Professional

 

St. Luke’s Albert Pujols Wellness Center for Adults with Down Syndrome

St. Luke’s Wellness Center is located at Mr. and Mrs. Theodore P. Desioge, Jr. Outpatient Center in Chesterfield Missouri.  This center is designed specifically for individuals with Down Syndrome who are 17 years of age or older.

The center offers:

  • nutrition coaching
  • exercise therapy
  • social services
  • classes and programs for individuals and, caregivers

For more information please contact 314-576-2300 or ADS.WellnessCenter@stlukes-stl.com. Or, visit their website.

 

The Down Syndrome Center in St. Louis

We are very fortunate to have a Down Syndrome Center in St. Louis. It is located at St. Louis Children’s Hospital and has seen hundreds of patients with Down syndrome since it opened in 2005.

The Down Syndrome Center at St. Louis Children’s Hospital is a comprehensive and multidisciplinary clinic focusing on the medical and developmental needs of children with Down syndrome. Children are evaluated from birth to 21 years of age, including prenatally diagnosed cases. When your child visits the Down Syndrome Center, he/she will be evaluated by Dr. Dorothy Grange or the CPNP. They will focus on medical and developmental issues, and screening recommendations will be completed.

The Center also collaborates with other specialties as needed: Cardiology, Ophthalmology, ENT, Audiology, Therapy Services, Dietitian and Social Services. The Center also works with additional specialties such as Endocrine, GI, Neurology and Orthopedic Surgery. Our goal is to optimize the quality of life for your child by offering comprehensive individualized care in one setting.

The Center will make it simpler for you by:

  • Arranging appointments at one location with the specialists your child needs to see.
  • Arranging your appointments in the most efficient manner so you and your child gain the maximum benefit.
  • Using a collaborative approach because our team of experienced caregivers is in one location.

The Down Syndrome Center is located at St. Louis Children’s Hospital, 2nd Floor, Suite 2C.

For more information please contact 800.678.5437 or 314.454.6093 or downsyndromecenter@kids.wustl.edu. Or, visit their website.

Helpful Websites

American Academy of Pediatrics

Down Syndrome Information Alliance

National Down Syndrome Society

National Association for Down Syndrome