Children with Down Syndrome: Health Care Information for Families

Down syndrome is a common condition caused by having "extra" copies of genes on the 21st chromosome. Those extra genes change development during pregnancy and continue to have effects after birth and throughout a person's life. Each person with Down syndrome is unique, having some of the many possible health, learning and related differences that can occur with this condition.

Treatments for children with Down syndrome

Some of the differences in people with Down syndrome are common and visible, like facial appearance. Other changes are less common or less visible but can still cause problems or may need special treatments.

The "special treatments" may include medicines, surgeries or changes in what you should expect. There are no medicines or therapies that are needed by all people with Down syndrome. There are also no medicines or therapies that can "cure" Down syndrome. Your child's doctor should be your starting point. Your child needs regular doctor visits and a few special tests. Pediatric specialists may also need to be involved.

AAP guide for families of children with Down syndrome

The American Academy of Pediatrics (AAP) has developed a special guide to help parents and families of children with Down syndrome. It focuses on medical topics that affect physical health. Other issues can affect social and school success. While these issues may not require doctors or other medical resources, they are still important issues for children with Down syndrome.

The medical issues for a child with Down syndrome change with age. For this reason, the document is divided into several age groups (available as PDF downloads below). Each age group includes a list of issues that may be important to your child at that age.

• Introduction

• The Prenatal Period (the time before birth)
  

• Birth to 1 Month

• 1 Month to 1 Year

• 1 Year to 5 Years

• 5 Years to 12 Years

• 12 Years to 21 Years or Older

The information in these guidelines has grown with the help of families, Down syndrome clinics, and doctors around the world. Most of the information is easy to follow. Many tests only need to be done once. Some areas might need to be looked at again, or even many times, as the child grows to an adult. Some tests or pediatric specialists might be needed that are not available in your area. Your doctor can help to sort out the best next steps when something can't be done quickly or nearby.

Parent support groups

Local Down syndrome parent support groups can be a very good place to learn about doctors, therapists and other providers in your community. They may also be able to help with questions about child care, preschools and schools, other local developmental programs, problems with behavior, etc. Your doctor's office should have names and contact information for groups in your area.

More information

• AAP Updates Recommendations for Care of Children with Down Syndrome

• Atlantoaxial Instability in Children with Down Syndrome
  

• Living With Down Syndrome (U.S. Centers for Disease Control & Prevention)