Pediatric Down Syndrome
Pediatric Down Syndrome
The Down Syndrome Clinic at Children’s Health℠ Specialty Center Dallas Campus is designed to serve all the health needs of children with Down syndrome. At this multidisciplinary clinic, a team of a providers from different specialties come together to provide a variety of services within one office visit.
What is Pediatric Down Syndrome?
Down syndrome is a medical condition that occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia and thyroid conditions.
A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes and a single deep crease across the center of the palm. All people with Down syndrome experience cognitive delays ranging from mild to significant. Every person with Down syndrome is a unique individual, so behavior, mental ability and physical development varies from person to person.
Down Syndrome Clinic services include:
- Physical examinations, necessary tests and lab work
- Developmental assessments of gross and fine motor skills
- Speech/language and feeding assessments
- Genetic counseling, family history analysis and discussion of recurrence risk and reproductive options
- Psychosocial assessment and family counseling
- Referrals to medical specialists, early childhood intervention programs, community resources and support groups
- Financial counseling and referral for supplemental income programs
- Parent-to-parent support and networking opportunities with representatives from the Down Syndrome Guild
- A transition clinic when the child is approaching adulthood to assess skills and independence level
- Interpreters for many languages are available upon request
Pediatric Down Syndrome Doctors and Providers
Assistant Professor at UT Southwestern Medical Center
Frequently Asked Questions
How often does it occur?
Down syndrome is the most common chromosomal condition, occurring in one of every 691 babies in the United States. There are more than 400,000 people living with Down syndrome in the U.S., and it occurs in people of all races and economic levels.
The incidence of births of children with Down syndrome increases with the age of the mother. Younger women are more fertile, however, so 80% of children with Down syndrome are born to women younger than 35.
How does it happen?
There are three types of Down syndrome:
- Trisomy 21 (nondisjunction) accounts for 95% of cases.
- Translocation accounts for about 4%.
- Mosaicism accounts for about 1%.
There is no way that parents can cause or prevent the occurrence of Down syndrome.
Is there a treatment?
There is no cure for Down syndrome; however, many of the associated health problems are treatable, and many people with Down syndrome lead healthy lives.
Life expectancy for people with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today.
What should I expect for the future?
Quality educational programs, a stimulating home environment, good health care and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.
People with Down syndrome attend school, work, play sports, have friends, make decisions for themselves and contribute to society in many ways.
When does the Down Syndrome Clinic meet?
We see patients on Thursday and Friday mornings. The transition clinic meets every second Thursday morning of the month.
Where is the clinic located?
Children’s Health Specialty Center Dallas Campus, Clinic F-4200, fourth floor. Visit this page for specific driving directions and parking information.
How long does an appointment last?
You will need to plan to be at clinic at least three hours for the first visit to meet with all the professionals available (clinical nurse specialist, social worker, genetic counselor, parent volunteer and therapists). Feel free to bring snacks and toys to clinic to entertain your child.
What if I’m going to be late?
We understand that unexpected things can happen, but please make every effort to be on time to your appointment. If you know you are going to be late, please call and let us know at 214-456-2357. Since other families need to see the same providers, showing up more than 20 minutes late may require the appointment to be rescheduled.
How can I schedule an appointment?
Please call the Genetics schedulers at 214-456-2357 to make an appointment. If your child is a new patient, we ask that you or your doctor provide medical records from the providers outside of the Children’s Health system, including visit notes from your child’s primary care doctor and any specialists your child may be seeing. A copy of genetic testing results and insurance information is also needed.
Clinical Nurse Specialist and Physician
Gather medical history information, do physical exams, make referrals, order lab tests, complete forms, write letters to primary health care providers to summarize the visit
Provide information regarding community resources, short term counseling about developmental concerns, school needs issues, sibling and family adjustment issues, and behavior management
Discuss chromosomes and genetic recurrence risk, gather family history information, answer questions about inheritance
Provide brief evaluation of skills, including fine motor, visual motor, self-care skills as well as advice about new and continuing therapies
Provide brief speech-language evaluation, oral-motor feeding skills, education on home strategies and what to expect from speech-language or feeding therapy, make referrals for follow-up outside of clinic as appropriate
DS Guild Parent Representative
Provide information about parent support groups, local activities, answer questions from a parent’s point-of-view
- National Down Syndrome Congress (Toll Free: 800-232-6372)
- National Down Syndrome Society (Helpline: 800-221-4602)
- National Association for Down Syndrome (Phone: 630-325-9112)
- ARC of Texas
- Medicaid Waiver Programs
Navigate Life Texas
Local Support Groups
- Down Syndrome Partnership of North Texas
Fort Worth, TX
- East Texas Down Syndrome Group
- Red River Valley Down Syndrome Society
- Down Syndrome Guild of Dallas