Down Syndrome
- Introduction
- What is Down syndrome and what causes it?
- What are the symptoms of Down syndrome?
- How is it diagnosed?
- What is the prognosis?
- What is the risk for other family members or future babies?
- What treatments/therapies/medications are recommended or available?
- How will my child and our family be impacted?
Introduction
What is Down syndrome and what causes it?
What are the symptoms of Down syndrome?
How is it diagnosed?
What is the prognosis?
What is the risk for other family members or future babies?
What treatments/therapies/medications are recommended or available?
How will my child and our family be impacted?
Resources
Information & Support
For Parents and Patients
Support
National Down Syndrome Congress
The NDSC, a membership organization, offers parent resources, including a "new parent package" of information, as well as
news and events, government activities, and information on self-advocacy.
General
Down Syndrome (Genetics Home Reference)
Excellent, detailed review of condition for patients and families; sponsored by the U.S. National Library of Medicine.
Down Syndrome (MedlinePlus)
From the National Library of Medicine and National Institutes of Health, offers many links to high-quality sources of information
for patients and their families.
Down Syndrome - Health Issues
Site developed and edited/authored by a pediatrician, Len Leshin, MD, who has a son with Down syndrome. Includes a number
of essays by experts about specific health topics and provides other useful links.
Down Syndrome Resources: Washington State
The Center for Children with Special Needs provides various resources for specific conditions, including Down syndrome.
Living with Down Syndrome (Down Syndrome Educational Trust) ( 951 KB)
This 34-page document provides information about Down syndrome; family and school issues; People First and cultural issues.
International Foundation for Genetic Research (The Michael Fund)
Advocacy organization aimed at fund-raising for research, improving care and education of children with Down syndrome, and
right-to-life issues.
The International Mosaic Down Syndrome Association
Aims to assist any family or individual whose life has been affected by mosaic Down syndrome.
What is Down Syndrome (NDSS)
Overview of Down syndrome from the National Down Syndrome Society (NDSS).
Sexuality and People with Disabilities ( 257 KB)
This Medical Home newsletter provides information for primary care providers and families including Sexuality and People with
Disabilities; American Academy of Pediatrics recommendations for education about sexuality; tips for parents; and resources,
books, and websites for parents and providers.
Hearing and Vision Loss Associated with Down Syndrome (TSBVI)
An overview for families; Texas School for the Blind and Visually Impaired.
Hearing and Vision Loss Associated with Down Syndrome (Spanish version)
From the Texas School for the Blind and Visually Impaired; overview aimed at families. English version available at http://www.tsbvi.edu/Outreach/seehear/summer98/downsynd.htm.
Dental Care for the Patient with Down Syndrome
Topics covered are: Medical problems associated with Down syndrome that can affect dental treatment; proper home care and
prevention of dental diseaset; techniques to help children with Down syndrome become cooperative dental patients; choosing
the right dentist; and how to communicate effectively with the dental staff. by Dr. Elizabeth S. Pilcher, 1997, but still
relevant.
Patient Education
A Parent's Guide on Puberty for Children with Disabilities ( 7 KB)
A toolkit for parents to use as they choose, this publication was developed and written by Vanderbilt Leadership Education
in Neurodevelopmental Disabilities (LEND) long-term trainees.
Children with Down Syndrome: Health Care Information for Families (AAP)
Guide to help parents and families of children with Down syndrome. Focuses on medical topics, by age, that affect physical
health. PDF downloads available; American Academy of Pediatrics (AAP).
Dental Care for the Patient with Down Syndrome
Topics covered are: Medical problems associated with Down syndrome that can affect dental treatment; proper home care and
prevention of dental diseaset; techniques to help children with Down syndrome become cooperative dental patients; choosing
the right dentist; and how to communicate effectively with the dental staff. by Dr. Elizabeth S. Pilcher, 1997, but still
relevant.
Down Syndrome (Genetic Science Learning Center)
A brief educational overview of the genetics of Down syndrome from the Genetic Science Learning Center at the University of
Utah.
Toilet Training Children with Down Syndrome (National Down Syndrome Society)
The NDSS offers this guide on their website as a guide to determine toileting readiness and teaching toileting skills. Includes
simple images that may be used as visual cues. This guide may be helpful in teaching toileting skills to any child with a
developmental disability.
Services
Bone Densitometry/DEXA
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Dental Care Expense Assistance
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Developmental - Behavioral Pediatrics
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Early Intervention for Children with Disabilities/Delays
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Gynecology (Ped/Adol, Special Needs)
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Nutrition Assessment Services
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Occupational Therapy, Pediatric
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Orthodontics
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Pediatric Dermatology
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Pediatric Gastroenterology
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Pediatric Immunology/Rheumatology
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Pediatric Infectious Disease
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Psychiatrist, Child-18 (MD)
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Psychologist, Child-18 (PhD, PsyD)
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Public Schools
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Public Special Schools
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For other services related to this condition, browse our Services categories or search our database.
Studies
Clinical Trials in Children with Down Syndrome (clinicaltrials.gov)
DS-Connect: The Down Syndrome Registry (NIH)
Developed by the Down Syndrome Consortium, led by the National Institutes of Health and involving several Down syndrome advocacy
and professional organizations, to offer opportunities for patients/families and researchers to connect and to allow access
to research data by families.
Authors
Author: | Lisa Samson-Fang, MD - 8/2012 |
Compiled and edited by: | URLEND Trainees, 2011-2012 - 3/2012 |
Content Last Updated: | 11/2015 |