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Health Care Guidelines 

*Health Care Information for Families of Children with Down Syndrome

(taken from the American Academy of Pediatrics) 

Your child’s doctor should be your starting point.  Your child needs regular doctor visits and a few special tests.  Medical specialists may also need to be involved. 

The medical issues for a child with Down syndrome change with age.  For this reason, this document is divided into several age groups.  Each age group includes a list of issues that may be important to your child at that age.  Your doctor can check the full AAP guideline for more details. 

The information within each age group is sorted by the parts of the body that are affected (heart, ears, etc).  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. 

This document focuses on medical topics that affect physical health. 

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.  However, some tests or 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. 

When you visit the doctor, you might want to bring a notebook to write down information from each visit.  A notebook will help you keep all of your child’s medical information in one place.  This will be valuable when you meet with new doctors or with others involved in your child’s care. 

Local 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 daycare, preschools and schools, other local developmental programs, problems with behavior, help with child care, etc.  Your doctor’s office should have names and contact information for groups in your area.  

Click HERE for the full report and the option to download the entire document to use with your medical doctor.

The National Down Syndrome Society (NDSS) has also developed these age-related healthcare guidelines: 

Keeping Children & Adolescents Healthy

Brian G. Skotko, MD, MPP has created a presentation for Keeping Children & Adolescents with Down Syndrome Healthy.  Dr. Skotko is a medical geneticist and co-director of the Down Syndrome Program at Massachusetts General Hospital.  This presentation provides information on managing behavioral and medical issues for children and adolescents with Down syndrome. (link borrowed from the Down Syndrome Guild of Kansas City)

Health Care Information for Adults with Down Syndrome

The IDD Toolkit - This is a website devoted to information for primary care givers of adults with intellectual and developmental disabilities (IDD), but is also a great resource for parents to download information and share with physicians. It offers health care providers best-practice tools and a wealth of information regarding specific medical and behavioral concerns of adults with IDD, including resources for patients and families.

*“Health Care Information for Families of Children with Down Syndrome” was created in July 2013 by the American Academy of Pediatrics (AAP) to give parents and families information about the special health care needs for children with Down syndrome.  This document should be used together with the care given by a child’s doctor.  This information is based on the “Health Supervision for Children with Down Syndrome” clinical report from the American Academy of Pediatrics, available here.

The “Health Care Information for Families of Children with Down Syndrome” Ad-Hoc Writing Committee: 
Marilyn J. Bull, MD, FAAP  (Chairperson) George T. Capone, MD W. Carl Cooley, MD, FAAP Philip Mattheis, MD, FAAP Richard J. Robison, PhD Robert A. Saul, MD, FAAP Maria A. Stanley, MD, FAAP Paul Spire  (AAP Staff)