Individuals with Down syndrome need the same medical care as their same-age peers, However, there are additional measures physicians should be familiar with and conduct with individuals with Down syndrome. Parents are encouraged to ensure their child’s medical providers are familiar with these guidelines, even if their child shows no signs of a specific condition.
Common medical considerations for individuals with Down syndrome are listed below. May are correctible through surgery and/or medical treatment.
Congenital heart disease
Gastrointestinal concerns, such as celiac disease
Eye problems, such as cataracts or strabismus
Alzheimer’s disease, early-onset
Parents should understand it is very unlikely their child will develop all or even most of these medical conditions, and need to understand many are highly treatable. Parents also need to know that life expectancy is now 60 years with some people living into their 70's.
The Children's Comprehensive Care Clinic in Austin is a medical home serving children (up to age 18 years at time of referral) with multi-system medical needs, in addition to a Down syndrome diagnosis. Psychiatric care is available for clients with Down syndrome; however, the Clinic does not offer psychiatric services to children whose medical home is another provider. Referrals are accepted from anyone in the community (including parents/guardians). The referral process begins with a phone call to the Clinic at (512) 628-1898 during which you will discuss your child's medical needs, insurance, and where you live. The Clinic accepts a wide range of insurances, including Medicaid. The Clinic is located at 5339 N. IH-35 Frontage Road, Suite 100; Austin, TX 78723.
For individuals with limited or no health insurance, the CommUnity Care Southeast Health and Wellness Clinic is an option. Dr. Adam Barta and the residents he trains are very familiar with the health needs of individuals with Down syndrome from birth to adulthood.
At this time, there is no Down syndrome specialist or Down syndrome clinic in the Central Texas area. However, DSACT members annually provide DSACT with the names of healthcare providers they have grown to trust. Use the button below to access this list.
Down syndrome cognition research is making great strides to:
identify the genes on chromosome 21 that cause characteristics of Down syndrome
develop treatments for the cognitive effects of Down syndrome
transfer therapies developed for Alzheimer's disease to Down syndrome
Recent advances include:
2017: LuMind Research Down Syndrome funds planning efforts to establish a Down Syndrome Clinical Trials Consortium, focused initially on advancing Alzheimer's therapies for individuals with Down syndrome
2014: Three different clinical trials (Phase II Roche study and two others) ongoing.
2014: Kennedy Krieger Institute at Johns Hopkins has launched 2 studies of the use of Alzheimers treatments for individuals with Down syndrome.
2013: Successful completion by Roche Pharmaceutical of a Phase I clinical trial to investigate safety of molecule to address cognitive and behavioral deficits associated with Down syndrome.
2013: Launch of national Down Syndrome Patient Registry.
2011: Formation of NIH Down Syndrome Consortium.
2008: Establishment of Linda Crnic Institute for Down Syndrome at the University of Colorado at Denver with $34 million grant to address basic research, clinical research and clinical care.
2007: Stanford study of Down syndrome mouse models noted 17 days of low-dose therapy with pentylenetetrazole (PTZ) produced normal learning behavior.
2005: Establishment of the Center for Research and Treatment of Down Syndrome at Stanford University. The Center seeks to apply research discoveries to useful treatments and focuses on the cognitive effects of Down syndrome.
2003: Establishment of the Down Syndrome Research and Treatment Foundation. DSRTF's mission is to stimulate biomedical research that will accelerate the development of treatments to significantly improve cognition, including memory, learning and speech, for individuals with Down syndrome.
DSACT does not endorse (or discourage the use of) nutritional supplements developed specifically for Down syndrome (such as Nutrivene), or medications such as Piracetam, Aricept, or Exelon for use with individuals with Down syndrome. Whether or not to use these supplements or medications is a matter to be discussed with your child's doctor.
Resources on Health
Case for Inclusion - This site holds a wealth of information about and the ability to compare states on issues pertinent to the disability community, from Medicaid waiver programs to supported employment.
www.ds-health.com - This site includes Health care guidelines for individuals with Down syndrome. This is a wonderful DS health-related website maintained by a Corpus Christi pediatrician, Len Leshin, M.D., who has a son with DS. Find a wealth of information and resources on this website, as well as abstracts of clinical research articles translated into plain English.
“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.
Texas Parent 2 Parent - support and information to families of children with disabilities
Down Syndrome Clinic at Kennedy Krieger Institute, part of Johns Hopkins Medical Center. The Kennedy Krieger DS Clinic provides comprehensive medical and therapeutic care to individuals with DS; the website lists current Johns Hopkins clinical research studies related to DS. Often the researchers are looking for individuals to participate in the research studies.
Riverbend Down Syndrome Association - Wonderful, highly-informative and well-indexed website of an Illinois Down syndrome association. Find articles on health, development, education and a host of other topics.
Down Syndrome Autism Connection - Well organized dual-diagnosis resource dedicated solely to co-occurring Down syndrome and autism spectrum disorders (DS-ASD).
SPECS4US makes the Erin's World eyeglasses frame, designed by an optician mother of a child with Down syndrome to accommodate the features of children and adults with Down syndrome. These frames are available through several Central Texas-area eye care professional offices.
Funding for medical needs
UnitedHealthcare Children's Foundation is a 501(c)(3) charitable organization providing medical grants to help children gain access to health-related services not fully covered by a child's commercial health insurance plan.
Variety - The Children's Charity of Texas offers financial assistance and services directly to children with special needs, for medical and educational expenses.
Resources on Down Syndrome Research
Recommended Books About Therapy And Other Issues
Woodbine House is a publisher specializing in books about children with special needs. Our titles within the Special-Needs Collection cover AD/HD, autism, celiac disease, cerebral palsy, Down syndrome, spina bifida, early intervention, inclusion, special education, communication skills, and more.
DSACT does not provide specific medical advice to any individual with Down syndrome. This website provides general health information about Down syndrome. For specific medical questions, contact your healthcare professional.