Physical Therapy Guide to Down Syndrome
Down Syndrome, also known as Trisomy 21, is the most common chromosomal condition in the United States. It affects 1 in 700 babies born each year. In the U.S. and other developed countries, the average life span for people with DS has improved in recent decades. It is currently about 60 years. Most children with DS take longer than average to meet developmental milestones. Children with DS benefit from various forms of support. They achieve their best potential when they:
- Receive excellent health care and therapy services.
- Access educational resources.
- Have strong family and community support.
Many teens and adults with DS lead happy, productive lives.
Physical therapists work with people with DS from infancy through adulthood. They help them function as independently as possible during different phases of life. Physical therapists help people with DS gain strength and enjoy movement to benefit their overall health. Physical therapists are movement experts. They improve quality of life through hands-on care, patient education, and prescribed movement. You can contact a physical therapist directly for an evaluation. To locate a physical therapist in your area, visit Find a PT.
Every U.S. state and territory offers early intervention programs for infants and toddlers with developmental delays. Visit the ECTA Center to find your state program’s contact information.
What Is Down Syndrome?
Down syndrome, or Trisomy 21, is a genetic disorder in which babies have an extra copy of chromosome 21. Most people have 23 pairs of chromosomes or 46 chromosomes in each cell. However, most babies with DS have three copies of chromosome 21 instead of two copies. Chromosomes determine how a baby grows in the mother's womb and how the body functions after birth. An extra copy of chromosome 21 causes changes in the development of the child’s brain and body. This results in differences in cognitive and physical function.
There are three known types of DS.
Type 1. The most common type of DS is called nondisjunction trisomy 21. This type of DS occurs when there are three copies of chromosome 21 in the fertilized egg. As the baby develops, the extra chromosome gets copied into every cell in the body.
Type 2. About 4% of all people with DS have type 2, or translocation trisomy. In this type, part of chromosome 21 breaks off during cell division of the fertilized egg. It then attaches to another chromosome. The chromosome total is still the expected 46, but the extra part of chromosome 21 causes DS characteristics.
Type 3. Mosaic trisomy 21 occurs in about 1% of persons with Down syndrome. This type of DS develops when an error occurs in one of the cell divisions of the fertilized egg. Not all cell divisions are affected. Some of the baby's cells contain 46 chromosomes, which is typical, but others contain an extra copy of chromosome 21. People with mosaic DS typically present with fewer DS characteristics.
Signs and Symptoms
Down syndrome may be found during pregnancy through diagnostic tests. When not found before birth, DS usually is noticed at birth based on physical traits. These may include:
- Low muscle tone and loose joints.
- A single deep crease across the palm.
- A slightly flattened facial profile.
- An upward slant to the eyes.
A blood test of a newborn baby can confirm a DS diagnosis.
Babies with DS often have delayed motor development (movement) due to:
- Low muscle tone.
- Decreased strength.
- Looseness at the joints.
- Postural and balance problems.
- Trouble feeding.
- Challenges with hand use.
They may develop and use language more slowly. Often children with DS need more time to learn complex movements like hopping on one foot or riding a tricycle. When movement is hard, children with DS may opt to stay inactive and are more likely to gain excess weight.
About half of the babies born with DS will have congenital heart disease. This may be found at birth or shortly after. Children with DS also may experience problems with their vision and hearing, in addition to muscle, bone, and joint issues. Pediatric doctors follow specific guidelines for children with DS. Your child's doctor will check for any of these potential problems. Research supports monitoring the hip joints by a bone and joint specialist.
From the teen years and into adulthood, people with DS may be more likely to develop other conditions compared with the general population. These include:
- Teeth and gum issues.
- Poor cardiovascular health.
- Thyroid dysfunction.
- Lower bone density.
- Digestive problems.
- Sleep apnea.
- Early-onset dementia.
Your child’s health care team can monitor for these other conditions during routine therapy assessments.
How Is It Diagnosed?
A doctor-ordered blood test to analyze a person's chromosomes is used to diagnose all types of DS. For people with DS, or suspected DS, a physical therapist can identify and diagnose problems such as:
- Muscle weakness.
- Poor postural alignment.
- Impaired balance.
- Inefficient movement habits.
- Gross motor (movement) delays.
How Can a Physical Therapist Help?
The physical therapist is an important partner in health care and fitness for anyone diagnosed with DS. Physical therapists help people with DS:
- Gain strength.
- Improve balance and coordination.
- Align and support their posture.
- Achieve movement skills to function at their best throughout all life stages.
Most children with DS benefit from starting physical therapy as newborns (NDSS, 2021).
Physical therapists use play to help babies and children learn motor skills. They work with teens and adults to help them develop functional skills needed for daily home and job tasks and to enjoy hobbies and leisure activities. Physical therapists help children with DS gain strength through fun treatment activities that improve their ability to move and stay active.
Your child's physical therapist will perform a full evaluation. It will begin with gathering information about your child's birth and development, general health, and any parental concerns. The evaluation also will include a physical exam and a motor skills assessment. Your physical therapist will then develop a treatment program specific to you or your child's needs and goals. Your physical therapist will work with you and your child to create goals around the six "F" words: family, friends, fun, fitness, function, and future.
Information gathering. For children with DS, your physical therapist will ask questions such as:
- At what age did your child first perform certain activities? They may ask when your child began holding their head upright, rolling over, sitting up, crawling, walking, and running.
- Has your child been sick or hospitalized? When did your child last see a doctor or other health care provider? Were any health concerns shared with you during that visit? Has your child had any surgeries?
- What are your main concerns?
- What are your goals for your child and your family's routines and hobbies? What do you hope to accomplish through physical therapy?
When children with DS become teens and adults, the physical therapist will focus on the patient’s goals and concerns, looking to the parent or caregiver for input as needed.
Physical exam. The physical exam may include measuring your child's height and weight, observing movement patterns, and providing a hands-on assessment of:
- Muscle strength and muscle tone.
- Joint stability.
- Balance and coordination.
Your physical therapist may assess your child's heart health and fitness. They also may evaluate their foot and ankle postures and note any need for supportive footwear.
Motor skills assessment. Your physical therapist will do specific tests to determine the level and quality of your child's movement skills. They will assess your child's ability to sit, crawl, kneel, pull up from sitting to standing, and walk. They also may assess more advanced skills like running, jumping, or kicking and throwing a ball. Children with DS often find creative ways to move and position their bodies that cause added stress to the bones and joints. Your physical therapist will address any movement habits of concern. They also may screen for any problems with your child's hand use, vision, learning, and other developmental skills.
Treatment program development. Based on the evaluation, your physical therapist will design a treatment program specific to your child that may include:
- Improving strength. Your physical therapist may teach you and your child exercises to increase muscle strength. They also may help you find ways to establish or enhance daily routines to improve independence. Your physical therapist will identify games and fun tasks to improve your child's strength and adjust them as your child grows.
- Improving developmental skills. Your physical therapist will help your child master skills such as crawling, pulling up from sitting to standing, and walking. Research has shown that infants with DS can benefit from massage to improve muscle tone, motor coordination, and vision. Walking on a treadmill can promote earlier independent walking. Physical therapists help caregivers support their child's development. They provide hands-on training for positioning, movement, feeding, and play. Your physical therapist also may suggest changes at home to encourage:
- Movement development.
- Use of vision.
- Play skills.
- Identifying emerging skills. Many children with DS are on their own timelines. Comparing their development with other children can be frustrating for caregivers. Physical therapists help families identify mini-milestones and emerging skills. They help people with DS celebrate every success. Families can better promote and support their child's physical development by knowing what skills to expect next.
- Improving balance, coordination, and postural control. Some children may need extra time or special equipment before they learn to stand and walk on their own. Short ankle braces, called SMOs, are often recommended to help with balance, stability, and motor function. Many adults with DS report orthotics help improve their balance and walking skills and decrease pain. Your physical therapist also may work with your child to develop other skills as part of a fun physical therapy regimen. These may include jumping, skipping, and dribbling a ball.
- Improving physical fitness. Your physical therapist will suggest physical activities to keep your child active. Regular physical activity can reduce the risk of obesity and promote heart health. Finding an active and enjoyable hobby is important for any person. It is especially important for people with DS. Your physical therapist may connect you with sports and recreational groups that support social health and physical development. They also may connect you with local programs that provide mobility aids such as motorized vehicles for toddlers or adaptive bicycles for older children.
Because children learn habits from their parents, it is important to develop active family routines that limit sitting. Physical activity guidelines for preschool-aged children recommend three or more hours per day of active play or physical activity. Children ages 6 to 17 need 60 minutes per day of moderate to vigorous exercise to achieve health benefits. For adults, the recommended amount of moderate to vigorous activity is 30 minutes or more per day or 150 minutes per week.
- Family and caregiver coaching. Daily routines are an excellent opportunity to build strength, balance, and overall independence. Making targeted changes to everyday tasks with input from a physical therapist can help achieve family goals. A home-based physical therapist likely will incorporate your child's own toys, furniture, and other available items into therapy activities.
- Transition to adulthood. Physical therapists offer suggestions to modify home and work environments. They also teach how to physically access public transportation. They help people choose the right adaptive equipment when needed. For people who require care aides, physical therapists empower them to effectively direct caregivers during daily physical tasks. School services generally end when teenagers enter adulthood but planning and preparing for this time should begin much earlier than age 21.
Physical therapists promote the most physically independent future by encouraging family involvement, active routines, and community participation. Physical therapists provide services in homes, community centers, schools, and outpatient clinics. These services can be medical or educational and may overlap at different ages. For example, a young child may receive therapy services both at home through an early intervention program and in an outpatient clinic.
Physical therapists team with other health care providers to address the needs of people with DS. They will adjust the treatment plan as priorities shift throughout the life span. Research shows people with DS also can benefit from group activities, even in a virtual format.
Referrals. Your physical therapist may recommend other health care providers be part of your or your child's health care team. Examples include a developmental pediatrician, a cardiologist, an occupational therapist, or a speech/language pathologist. Your physical therapist also may recommend local resources such as adaptive sports leagues and activities.
Can This Injury or Condition Be Prevented?
The exact origin of the chromosomal changes causing DS is unknown. Most often, DS results from spontaneous mutations. Women older than 35 years at the time of childbirth have an increased chance of having a baby with Down syndrome.
Physical therapists can help prevent or reduce many of the physical symptoms and functional concerns linked with DS. Due to differences in their muscles and joints, babies and young children often adopt alternative ways to move and position their bodies. These different movement patterns put added stress on bones and joints as a person ages. Physical therapists teach children with DS more efficient ways to use their bodies to help prevent future problems. They help children learn how to move with more symmetry (balance) and without using extreme postures.
What Kind of Physical Therapist Do I Need?
All physical therapists are prepared through education and experience to treat patients with various conditions or injuries, including DS. You may want to consider:
- A physical therapist who is experienced in pediatrics and developmental disorders. Some physical therapists have a pediatric practice and work with people in the clinic, home, school, and community.
- A physical therapist who is a board-certified clinical specialist or who has completed a residency or fellowship in pediatric physical therapy. This physical therapist has advanced knowledge, experience, and skills that may apply to developmental conditions such as DS.
- A physical therapist who specializes in neurological or musculoskeletal conditions or pain management for adults with DS. Your doctor or physical therapist can direct you to the proper specialist.
- A physical therapist who provides services through the early intervention program. Each state in the U.S. offers early intervention programs for infants and toddlers with developmental delays from birth to three years. Find the agency for your state at the ECTA Center, or contact your child's doctor.
- Many large hospital systems host DS clinics, staffed by doctors and therapists who specialize in supporting the health and development of people with DS.
You can find physical therapists in your area with these credentials and clinical expertise on Find a PT, a tool built by the American Physical Therapy Association.
General tips when you are looking for a physical therapist (or other health care provider):
- Ask family, friends, and other health care providers to recommend a physical therapist.
- Ask about the physical therapist's experience in helping children with Down syndrome or other developmental disorders before you make an appointment.
- Be prepared to describe your child's medical history and motor skills in as much detail as possible.
The Academy of Pediatric Physical Therapy contributed to this consumer resource. It is for informational purposes only and is not intended to represent the position of APTA Pediatrics. Special thanks to Nancy Schroeder, parent of a child with Down syndrome, who provided input and perspective for some of the language in this guide.
The American Physical Therapy Association believes that consumers should have access to information to help them make informed decisions and prepare them for their visit with a health care provider.
The following resources offer some of the best scientific evidence related to physical therapy treatment for Down syndrome. They report recent research and provide information on the standards of practice both in the United States and internationally. They link to a PubMed* abstract (which may offer free access to the full text) or other resources. You can read them or print out a copy to bring with you to your health care provider.
Centers for Disease Control and Prevention. Facts about Down syndrome. www.cdc.gov/ncbddd/birthdefects/DownSyndrome.html. Updated April 6, 2021. Accessed October 18, 2021.
Sollerhed AC, Hedov G. Active parents–active children—a study among families with children and adolescents with Down syndrome. Int J Environ Res Public Health. 2021;18(2):660. Article Summary on PubMed.
US National Library of Medicine, MedlinePlus. Down syndrome. www.nlm.nih.gov/medlineplus/downsyndrome.html. Updated August 27, 2021. Accessed October 18, 2021.
American Academy of Cerebral Palsy and Developmental Medicine. Care pathway: central hypotonia. https://www.aacpdm.org/publications/care-pathways/central-hypotonia. Published September 2019. Accessed October 18, 2021.
Ruiz-Gonzalez L, Lucena-Anton D, Salazar A, Martin-Valero R, Moral-Munoz J. Physical therapy in Down syndrome: systematic review and meta-analysis. J Intellect Disabil Res. 2019;63(8):1041-1067. Article Summary on PubMed.
van Gijzen A, Rouers E, van Douveren F, et al. Developmental dysplasia of the hip in children with Down syndrome: comparison of clinical and radiological examinations in a local cohort. Eur J Pediatr. 2019;178(4):559-564. Article Summary on PubMed.
US Department of Health and Human Services. Physical Activity Guidelines for Americans. 2nd ed. Washington, DC: US Dept of Health and Human Services; 2018. Accessed November 14, 2018.
US Department of Health and Human Services, National Institute of Child Health and Development. Down syndrome fact sheet. https://www.nichd.nih.gov/health/topics/factsheets/downsyndrome. Updated June 21, 2018. Accessed October 18, 2021.
Ptomey L, Szabo AN, Willis EA, et al. Remote exercise for adults with Down syndrome. Transl J Am Coll Sports Med. 2018;3(8):60-65. Article Summary on PubMed.
CanChild. About a life course approach. https://canchild.ca/en/research-in-practice/transitions/about-a-lifecourse-approach. Accessed October 29, 2021.
Global Down Syndrome Foundation. Facts and FAQ about Down syndrome. https://www.globaldownsyndrome.org/about-down-syndrome/facts-about-down-syndrome/. Accessed October 18, 2021.
National Down Syndrome Society. Early intervention. https://www.ndss.org/resources/early-intervention/. Accessed October 18, 2021.
American Academy of Pediatrics. National Down Syndrome Society. Caring for your family. https://www.ndss.org/resources/caring-your-family. Accessed June 24, 2022.
Rosenbaum P & Gorter JW. The 'F‐words' in childhood disability: I swear this is how we should think! Child Care Health Dev. 2012;38(4):457-463. Article Summary on PubMed.
Bull MJ; Committee on Genetics. Health supervision for children with Down syndrome. Pediatrics. 2011;128(2):393-406. Article Summary on PubMed.
Smith DS. Health care management of adults with Down syndrome. Am Fam Physician. 2001;64(6):1031-1038. Article Summary on PubMed.
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