There is no single, standard treatment for Down syndrome. Treatments are based on each individual's physical and intellectual needs as well as his or her personal strengths and limitations.1 People with Down syndrome can receive proper care while living at home and in the community.
A child with Down syndrome likely will receive care from a team of health professionals, including, but not limited to, physicians, special educators, speech therapists, occupational therapists, physical therapists, and social workers. All professionals who interact with children with Down syndrome should provide stimulation and encouragement.
People with Down syndrome are at a greater risk for a number of health problems and conditions than are those who do not have Down syndrome. Many of these associated conditions may require immediate care right after birth, occasional treatment throughout childhood and adolescence, or long-term treatments throughout life. For example, an infant with Down syndrome may need surgery a few days after birth to correct a heart defect; or a person with Down syndrome may have digestive problems that require a lifelong special diet. For more information, visit the What conditions or disorders are commonly associated with it? section.
Children, teens, and adults with Down syndrome also need the same regular medical care as those without the condition, from well-baby visits and routine vaccinations as infants to reproductive counseling and cardiovascular care later in life. Like other people, they also benefit from regular physical activity and social activities.
Early Intervention and Educational Therapy
“Early intervention” refers to a range of specialized programs and resources that professionals provide to very young children with Down syndrome and their families. These professionals may include special educators, speech therapists, occupational therapists, physical therapists, and social workers.
Research indicates that early intervention improves outcomes for children with Down syndrome.2,3 This assistance can begin shortly after birth and often continues until a child reaches age 3.4 After that age, most children receive interventions and treatment through their local school district.
Most children with Down syndrome are eligible for free, appropriate public education under federal law. Public Law 105-17 (2004): The Individuals with Disabilities Education Act (IDEA) makes it possible for children with disabilities to get free educational services and devices to help them learn as much as they can. Each child is entitled to these services from birth through the end of high school, or until age 21, whichever comes first. Most early intervention programs fall under this legislation.
The National Early Childhood Technical Assistance Center, run by the U.S. Department of Education, provides information and resources for parents and families looking for early intervention programs. Visit http://www.nectac.org for more information. Additional early intervention resources are available at http://www.earlyinterventionsupport.com/diagnosis/List/Down-Syndrome.aspx , and at http://www.familyvoices.org .
The law also states that each child must be taught in the least restrictive environment that is appropriate. This statement does not mean that each child will be placed in a regular classroom. Instead, educators will work to provide an environment that best fits the child's needs and skills.
The following information may be helpful for those considering educational assistance programs for a child with Down syndrome:
- The child must have certain cognitive or learning deficits to be eligible for free special education programs. Parents can contact a local school principal or special education coordinator to learn how to have a child examined to see if he or she qualifies for services under the IDEA.
- If a child qualifies for special services, a team of people will work together to design an Individualized Educational Plan (IEP) for the child. The team may include parents or caregivers, teachers, a school psychologist, and other specialists in child development or education. The IEP includes specific learning goals for that child, based on his or her needs and capabilities. The team also decides how best to carry out the IEP.
- Children with Down syndrome may attend a school for children with special needs. Parents may have a choice between a school where most of the children do not have disabilities and one for children with special needs. Educators and health care providers can help families with the decision about what environment is best. Integration into a regular school has become much more common in recent decades, and IDEA requires that public schools work to maximize a child's access to typical learning experiences and interactions.5
The U.S. Department of Education funds the Parent Center Network, which provides resources, contacts, and assistance for parents and families trying to navigate special education programs. Visit http://www.parentcenternetwork.org/ for more information.
A variety of therapies can be used in early intervention programs and throughout a person's life to promote the greatest possible development, independence, and productivity. Some of these therapies are listed below.5
- Physical therapy includes activities and exercises that help build motor skills, increase muscle strength, and improve posture and balance.
- Physical therapy is important, especially early in a child's life, because physical abilities lay the foundation for other skills. The ability to turn over, crawl, and reach helps infants learn about the world around them and how to interact with it.
- A physical therapist also can help a child with Down syndrome compensate for physical challenges, such as low muscle tone, in ways that avoid long-term problems. For example, a physical therapist might help a child establish an efficient walking pattern, rather than one that might lead to foot pain.6
- Speech-language therapy can help children with Down syndrome improve their communication skills and use language more effectively.
- Children with Down syndrome often learn to speak later than their peers. A speech-language therapist can help them develop the early skills necessary for communication, such as imitating sounds. The therapist also may help an infant breastfeed because breastfeeding can strengthen muscles that are used for speech.5
- In many cases, children with Down syndrome understand language and want to communicate before they can speak. A speech-language therapist can help a child use alternate means of communication, such as sign language and pictures, until he or she learns to speak.7
- Learning to communicate is an ongoing process, so a person with Down syndrome also may benefit from speech and language therapy in school as well as later in life. The therapist may help with conversation skills, pronunciation skills, understanding what is read (called comprehension), and learning and remembering words.
- Occupational therapy helps find ways to adjust everyday tasks and conditions to match a person's needs and abilities.
- This type of therapy teaches self-care skills5 such as eating, getting dressed, writing, and using a computer.
- An occupational therapist might offer special tools that can help improve everyday functioning, such as a pencil that is easier to grip.
- At the high school level, an occupational therapist could help teenagers identify jobs, careers, or skills that match their interests and strengths.
- Emotional and behavioral therapies work to find useful responses to both desirable and undesirable behaviors. Children with Down syndrome may become frustrated because of difficulty communicating, may develop compulsive behaviors, and may have Attention Deficit Hyperactivity Disorder and other mental health issues. These types of therapists try to understand why a child is acting out, create ways and strategies for avoiding or preventing these situations from occurring, and teach better or more positive ways to respond to situations.
- A psychologist, counselor, or other mental health professional can help a child deal with emotions and build coping and interpersonal skills.
- The changes in hormone levels that adolescents experience during puberty can cause them to become more aggressive. Behavioral therapists can help teenagers recognize their intense emotions and teach them healthy ways to reach a feeling of calmness.
- Parents may also benefit from guidance on how to help a child with Down syndrome manage day-to-day challenges and reach his or her full potential.8
Drugs and Supplements
Some people with Down syndrome take amino acid supplements or drugs that affect their brain activity. However, many of the recent clinical trials of these treatments were poorly controlled and revealed adverse effects from these treatments. Since then, newer psychoactive drugs that are much more specific have been developed. No controlled clinical studies of these medications for Down syndrome have demonstrated their safety and efficacy, however.
Many studies of drugs to treat symptoms of dementia in Down syndrome have included only a few participants. The results of these studies have not shown clear benefits of these drugs, either.9,10,11 Similarly, studies of antioxidants for dementia in Down syndrome have shown that these supplements are safe, but not effective.12
More and more often, interventions for children with Down syndrome involve assistive devices—any type of material, equipment, tool, or technology that enhances learning or makes tasks easier to complete. Examples include amplification devices for hearing problems, bands that help with movement, special pencils to make writing easier, touchscreen computers, and computers with large-letter keyboards.
DS-Connect®: The Down Syndrome Registry
Parents and families of children with Down syndrome can connect with other families and people with Down syndrome from around the world to learn more and share information. The NICHD-led DS-Connect® is a safe and secure registry to help families and researchers identify similarities and differences in the symptoms and treatment of people with Down syndrome and guide future research. Learn more about DS-Connect®: The Down Syndrome Registry.
- National Human Genome Research Institute. (2010). Learning about Down syndrome. Retrieved June 11, 2012, from http://www.genome.gov/19517824 [top]
- Guralnick, M. J. (2010). Early intervention approaches to enhance the peer-related social competence of young children with developmental delays: A historical perspective. Infants and Young Children, 23, 73–83. [top]
- Guralnick, M. J. (2011). Why early intervention works: A systems perspective. Infants and Young Children, 24, 6–28. [top]
- NDSS. (n.d.). Early intervention. Retrieved June 11, 2012, from http://www.ndss.org/Resources/Therapies-Development/Early-Intervention/ [top]
- NDSS. (n.d.). Elementary & secondary education. Retrieved June 11, 2012, from http://www.ndss.org/en/Education-Development--Community-Life/Elementary--Secondary-Education [top]
- Winders, P. C. (n.d.). Gross motor development and Down syndrome. Retrieved June 11, 2012, from the NDSS website: http://www.ndss.org/en/Education-Development--Community-Life/Therapies--Development/Physical--Occupational-Therapy/#gross [top]
- Kumin, L. (n.d.). Speech & language skills in infants, toddlers & young children with Down syndrome. Retrieved June 11, 2012, from the NDSS website: http://www.ndss.org/en/Education-Development--Community-Life/Therapies--Development/Speech--Language-Therapy/#infants [top]
- NDSS. (n.d.). Managing behavior. Retrieved June 14, 2012, from http://www.ndss.org/Resources/Wellness/Managing-Behavior/ [top]
- Costa, A. C. (2011). On the promise of pharmacotherapies targeted at cognitive and neurodegenerative components of Down syndrome. Developmental Neuroscience, 33, 414–427. [top]
- Kishnani, P. S., Heller, J. H., Spiridigliozzi, G. A., Lott, I., Escobar, L., Richardson, S., Zhang, R., et al. (2010). Donepezil for treatment of cognitive dysfunction in children with Down syndrome aged 10–17. American Journal of Medical Genetics Part A, 152A, 3028–3035. [top]
- Mohan, M., Bennett, C., & Carpenter, P. K. (2009). Memantine for dementia in people with Down syndrome. Cochrane Database of Systematic Reviews, CD007657. [top]
- Lott, I. T., Doran, E., Nguyen, V. Q., Tournay, A., Head, E., & Gillen, D. L. (2011). Down syndrome and dementia: a randomized, controlled trial of antioxidant supplementation. American Journal of Medical Genetics Part A, 155A, 1939–1948. [top]