Be Our Partner! Book a Free Consultation Now! Become a Member > Get Involved >
Health Conditions > Health Articles > Find a Practitioner > Events >

Home  /  Health Conditions  /  Down Syndrome

Down Syndrome

Down syndrome happens when a person has an extra copy of chromosome 21. It is the most common chromosomal condition in the U.S. With regular health checks, early intervention and support, people with Down syndrome learn, work, build friendships and live longer, fuller lives than ever before.

Neck warning signs need urgent attention. Some people with Down syndrome have instability in the upper neck bones (atlantoaxial instability), which can press on the spinal cord and cause nerve damage. Contact the doctor immediately for a change in how the person walks or uses their arms or hands, a change in bowel or bladder control, neck pain or stiffness or a head that stays tilted, new weakness or tiring more easily, or a drop in activity or abilities (American Academy of Pediatrics). Numbness or tingling in the arms or legs is another sign to report (AAP family guide).

Snoring or pauses in breathing during sleep can be signs of obstructive sleep apnea, which is common in Down syndrome and can affect behavior, attention and the heart. Tell the doctor about loud breathing, snoring, pauses in breathing, restless sleep, unusual sleep positions (such as sitting up or sleeping with the neck arched back), waking often at night or daytime sleepiness (AAP family guide).

Signs that need a doctor’s visit: children with Down syndrome have a higher chance of leukemia (MedlinePlus Genetics). See the doctor for fever, easy bruising or bleeding, tiny dark-red spots under the skin, weakness or tiredness, pale skin, or bone or joint pain — these can have many other causes, and only a doctor can tell (National Cancer Institute). Infections can be more serious in people with Down syndrome, so even seemingly minor infections should be checked and treated quickly (NICHD, AAP family guide).

Be wary of “cures”. There are no medicines or therapies that can “cure” Down syndrome (American Academy of Pediatrics). Nutritional supplements are the most common alternative therapy families try, but well-designed studies are lacking (Roizen, 2005). A randomized trial in 156 babies found no evidence to support antioxidant or folinic acid supplements (Ellis et al., BMJ, 2008), and a review of 11 trials found no supplement or drug that improved thinking or development (Salman, 2002). NICHD notes that many trials of amino acid supplements were poorly controlled and found side effects (NICHD). The FDA warns that products claiming to treat a condition without being proven safe and effective waste money, can delay proper diagnosis and treatment, and can cause serious or even fatal injuries (FDA). Talk with your doctor about any new treatment you are considering (AAP family guide).

What is Down syndrome?

Down syndrome is a genetic condition in which a person is born with an extra copy of chromosome 21. Chromosomes are small “packages” of genes that guide how the body forms and works, and the extra chromosome changes how the brain and body develop (CDC). People with Down syndrome can lead healthy lives with supportive care (CDC). It is named after John Langdon Down, the first doctor to describe it systematically (NICHD).

Words matter. The National Down Syndrome Society asks people to use person-first language — “a child with Down syndrome,” not “a Down syndrome child” — and to say that people have Down syndrome rather than “suffer from” it (NDSS).

Three types

The physical features and behaviors are similar in all three types (CDC):

  • Trisomy 21 — every cell has three separate copies of chromosome 21. About 95 percent of people with Down syndrome have this type (CDC).
  • Translocation Down syndrome — an extra part or whole chromosome 21 is attached (“translocated”) to a different chromosome; about 3 percent (CDC). There are no distinct differences in thinking or health compared with trisomy 21 (NICHD).
  • Mosaic Down syndrome — some cells have three copies of chromosome 21 and others have the usual two; about 2 percent. People with mosaic Down syndrome may have fewer features of the condition (CDC).

How common is it?

Down syndrome is the most common chromosomal condition diagnosed in the United States. Each year, about 5,775 babies born in the U.S. have Down syndrome (CDC). It occurs in all ethnic and economic groups (NICHD).

What causes it?

Down syndrome is caused by a random error in cell division, most often while an egg or sperm is forming. No behavior of the parents and no environmental factor is known to cause it (NICHD). It has nothing to do with race, nationality, religion, income, or anything the mother or father did during pregnancy (Global Down Syndrome Foundation).

  • Age at pregnancy: the chance of having a baby with Down syndrome rises with the mother’s age, especially from 35 on. Even so, most babies with Down syndrome are born to mothers under 35, because many more babies are born to younger women (CDC).
  • Family history: parents who have one child with Down syndrome have a higher chance of having another, regardless of age (CDC). Most Down syndrome is not inherited, but translocation Down syndrome can be passed on by a parent who carries a rearranged chromosome and is not affected (MedlinePlus Genetics). A genetic counselor can explain the chances in future pregnancies (NICHD).

Prenatal screening and diagnosis

Whether to have prenatal testing is your choice, and your own beliefs and values matter; the American College of Obstetricians and Gynecologists (ACOG) says there is no right or wrong answer (ACOG). Both screening and diagnostic tests are offered to everyone who is pregnant (ACOG).

  • Screening tests estimate the chance that a baby has Down syndrome; they cannot diagnose it (ACOG). They include first-trimester blood tests with a nuchal translucency ultrasound (10 to 13 weeks), the second-trimester “quad” blood test (15 to 22 weeks), combined screening, and cell-free DNA testing of the pregnant person’s blood from 10 weeks. A positive screen means a higher chance, not a diagnosis, and a negative screen does not rule Down syndrome out (ACOG).
  • Diagnostic tests — chorionic villus sampling (CVS, 10 to 13 weeks) or amniocentesis (usually 15 to 20 weeks) — test cells from the placenta or the fluid around the baby and can tell with as much certainty as possible. They carry a very small chance of pregnancy loss (ACOG).
  • After birth, Down syndrome is often first suspected from physical features and is confirmed with a blood test that counts the baby’s chromosomes (NICHD). Neither screening nor diagnostic tests can predict the full impact of Down syndrome on a child (CDC).

Families use the information in different ways — some want time to learn about Down syndrome and plan the baby’s care, some may decide to end the pregnancy, and some choose not to test at all (ACOG). If a test finds Down syndrome, the American Academy of Pediatrics (AAP) recommends genetic counseling, talking with your doctor about the positive attributes of children with Down syndrome as well as possible health problems, and asking about family organizations and early intervention. A heart ultrasound (echocardiogram) before birth can help plan the best care (AAP family guide).

Features and strengths

Each person with Down syndrome is unique (AAP). Common physical signs include almond-shaped eyes that slant up, a flatter face, small ears, hands and feet, a single crease across the palm, low muscle tone and shorter height (CDC); still, people with Down syndrome look more like their own family members than like each other (Global Down Syndrome Foundation). Learning and speech usually develop more slowly, and intellectual disability is usually mild to moderate (MedlinePlus Genetics), with a wide range of abilities that can’t be predicted ahead of time (Global Down Syndrome Foundation).

The AAP notes that many people with Down syndrome understand more than they can say, and most have good social skills; respect for and attention to their abilities can make a big difference (AAP family guide). With appropriate support and treatment, many people with Down syndrome lead happy, productive lives (NICHD). Many complete high school, more are going on to college programs, some live on their own or with some support, and a small but growing number have romantic relationships and marry (Global Down Syndrome Foundation).

Health conditions to watch

Not every person will have serious health problems, and many associated conditions can be treated (NICHD). Conditions that are more common include:

On the other side of the ledger, solid-tumor cancers, heart attacks and strokes are rare in people with Down syndrome (Global Down Syndrome Foundation).

Living longer

Life expectancy has risen dramatically. In 1960, people with Down syndrome lived to about 10 years old on average; by 2007, to about 47 (CDC). NIH and the AAP now put average life expectancy at about 60 years, up from 25 in 1983 (NICHD, AAP). Babies born with a very low birth weight or a heart defect are less likely to survive their first year, and Black infants have lower first-year survival, for reasons that need more research (CDC).

Adulthood and aging

People with Down syndrome often have a gradual decline in thinking skills as they age, usually starting around age 50, and about half of adults develop Alzheimer’s disease, often in their fifties or sixties (MedlinePlus Genetics). The reason is partly the extra chromosome 21, which carries the gene for a protein (APP) that builds up into the plaques of Alzheimer’s; most people with Down syndrome have these plaques by age 40, though not all develop dementia (National Institute on Aging). The first clinical guideline for adults with Down syndrome strongly recommends screening for Alzheimer-type dementia starting at age 40, and earlier, more frequent diabetes screening (Tsou et al., JAMA, 2020). See our Alzheimer’s guide, and our Developmental Disabilities guide for services and rights across the lifespan.

Side by side

Six approaches compared

For every condition we look at the same six approaches: what each involves, what it typically costs, and what a patient can realistically expect.

ApproachWhat it involves Estimated costWhat to expect
Conventional medicine (AMA) Regular checkups following the AAP schedule: heart ultrasound at birth, thyroid blood tests, hearing and eye exams, a sleep study by age 4, celiac and neck checks when symptoms appear; early intervention with speech, physical and occupational therapy; an IEP at school; and adult care that includes dementia screening from 40. Early intervention is free or reduced-cost for eligible children; school services are free under IDEA; Medicaid EPSDT covers medically necessary care for enrolled children under 21. Specialist visits, tests and surgery: cost estimate being researched. Down syndrome is lifelong. Regular checks catch treatable problems early, early intervention improves outcomes, and average life expectancy is now about 60 years.
Chiropractic No role as a treatment for Down syndrome. Neck manipulation can be dangerous because of possible upper-neck (atlantoaxial) instability. Not applicable. Avoid neck adjustments. Report neck pain, head tilt or changes in walking to the doctor right away.
Acupuncture Being researched — coming soon.
Herbal medicine No herb, vitamin or supplement treats Down syndrome. Trials of antioxidants, folinic acid and other supplements found no benefit. Not applicable. Ask your doctor about any vitamin or supplement; some interact with medicines. We don’t list doses.
Massage therapy Gentle infant massage by parents, for bonding and comfort, alongside — not instead of — therapy. Learning to massage your own baby is free. Professional massage: about $50–$120 a session. Two small studies from one team found short-term gains in development and in parent bonding. Avoid pressure or stretching of the neck.
MBHA Wellness Coach Family-centered support: healthy weight and activity, sleep routines, friendships and inclusive sports, the move to adult life and work, help paying for care (regional centers, Medicaid waivers, SSI, ABLE accounts) and connecting with Down syndrome family groups. Cost estimate being researched. Many supports named here — early intervention, Parent Centers, family organizations — are free. Supports — never replaces — your family’s doctors, therapists and school team.

Approach 1 of 6

Conventional medicine (AMA)

There is no single, standard treatment for Down syndrome. Care is built around each person’s needs, strengths and limitations, often by a team that can include doctors, special educators, speech, occupational and physical therapists, and social workers. People with Down syndrome also need the same regular care as everyone else, from well-baby visits and vaccines to heart care later in life (NICHD). We name treatments but never doses.

1. Following the AAP health check schedule

The AAP’s 2022 clinical report, Health Supervision for Children and Adolescents With Down Syndrome (Bull et al., Pediatrics, 2022), sets out checks by age. AAP’s family version of the report is a handy checklist to bring to visits (AAP family guide); the main checks are summarized under “Health checks through life” below. Specialists that may be needed include a cardiologist, an ophthalmologist, an ear, nose and throat doctor and an audiologist (AAP family guide).

2. Treating related conditions

3. Therapy, early intervention and school

  • Therapies: physical therapy builds motor skills, strength, posture and balance and helps with low muscle tone; speech-language therapy builds communication, including sign language and pictures until speech comes; occupational therapy teaches self-care skills such as eating, dressing and writing, and later helps teens explore jobs (NICHD).
  • Early intervention can begin shortly after birth, and research shows it improves outcomes for children with Down syndrome (NICHD). Every state has a program; it is free or reduced-cost for eligible children, and a doctor’s referral is not needed (CDC). Services are planned with the family in an Individualized Family Service Plan under Part C of the Individuals with Disabilities Education Act (IDEA) (ECTA Center).
  • From age 3: IDEA Part B covers a free appropriate public education in the least restrictive environment (ECTA Center), planned in an Individualized Education Program (IEP). Learning alongside children without disabilities has become much more common (NICHD).

4. Adult care and Alzheimer’s

  • Plan the move to adult health care early; Got Transition suggests starting at ages 12 to 14 (Got Transition). Only about 5 percent of U.S. adults with Down syndrome have access to specialty clinics, so many rely on primary care doctors (NDSS) — bring the adult guidelines to visits.
  • The adult guideline’s only strong recommendation is screening for Alzheimer-type dementia starting at age 40. It also covers managing heart disease and stroke risk factors, screening for obesity, earlier and more frequent diabetes screening, and checking for causes of thin bones (osteoporosis) (Tsou et al., 2020). Tell the doctor about any loss of skills — not being able to do things the person used to do (AAP family guide).
  • Studies of Alzheimer’s medicines in adults with Down syndrome are few and of low quality, so it is hard to say whether they help (Cochrane review, 2015). NIH’s INCLUDE project and the DS-Connect registry support research, including clinical trials (National Institute on Aging).

What it costs

  • Early intervention: free or reduced-cost for eligible children (CDC).
  • School services: free under IDEA (ECTA Center).
  • Medicaid: children under 21 enrolled in Medicaid are entitled to EPSDT, which covers medically necessary care (Medicaid.gov). See the Wellness Coach section for waivers, SSI and ABLE accounts.
  • Specialist visits, sleep studies, heart surgery and private therapy: cost estimate being researched.

What to expect

Down syndrome is lifelong. Ongoing, appropriate medical care helps children and adults with Down syndrome live as healthy lives as possible (CDC), and social-emotional skills can keep improving with early intervention and therapy through early adulthood (AAP).

Find a medical doctor in our directory

Approach 2 of 6

Chiropractic

Chiropractic care has no role as a treatment for Down syndrome; we found no studies testing it as one. The bigger concern is safety.

No neck manipulation without medical clearance. A review in a chiropractic journal warned that adjusting the neck of a person with Down syndrome can have potentially fatal consequences, because of atlantoaxial instability, and that standards for safe adjusting have not been established (La Francis, J Manipulative Physiol Ther, 1990). No test or X-ray can tell who is at risk of nerve damage from this instability (AAP), and doctors take care with neck movements even during surgery (NICHD).

  • Even in the general population, spinal manipulation can cause short-lived soreness, and rare serious problems have been reported; people with underlying health conditions may be at higher risk (NCCIH).
  • Neck pain, a head tilt or changes in walking, hand use, or bowel or bladder control are reasons to call the doctor right away, not to see a chiropractor (AAP).
  • If an adult with Down syndrome wants care for back pain, talk with their doctor first and make sure any practitioner knows about Down syndrome and avoids the neck.

Find a chiropractor in our directory

Approach 4 of 6

Herbal medicine

No herb, vitamin or supplement has been shown to treat Down syndrome or improve learning, and the AAP says no medicine or therapy can cure it (AAP family guide).

What the research says

Safety first

  • Many supplements haven’t been tested in children; “natural” doesn’t mean safe; labels don’t always match what’s in the bottle; and some supplements interact with medicines (NCCIH).
  • Some needs are real and medical: the AAP recommends yearly tests for low iron and anemia, and a doctor may prescribe iron. Ask your child’s doctor about any vitamins or supplements (AAP family guide). We don’t list doses here.
  • People with celiac disease should ask a pharmacist about the ingredients in herbal, vitamin and mineral supplements, which can be hidden sources of gluten (NIDDK).

Approach 5 of 6

Massage therapy

Gentle massage can be a calm, close time together. Research in Down syndrome is limited to infant massage given by parents.

What the research says

  • In a Spanish study of 32 babies with Down syndrome aged 4 to 8 months, parents gave daily massage of at least 10 minutes for 5 weeks. Babies who got massage showed short-term gains in developmental scores compared with babies who were still waiting (Pinero-Pinto et al., 2020).
  • In a small pilot randomized trial by the same team, parents who massaged their babies showed greater short-term gains in acceptance of, commitment to and awareness of their influence on their baby (Pinero-Pinto et al., J Intellect Disabil Res, 2023).
  • Well-designed studies of alternative therapies in Down syndrome, including massage, are lacking (Roizen, 2005). Massage is a comfort measure, not a replacement for physical, occupational or speech therapy.

Safety

Massage appears to have few risks, but rare serious problems have been reported, and it should not be used to put off seeing a doctor (NCCIH). Because of possible neck instability (AAP), avoid strong pressure on, or stretching and twisting of, the neck, and tell any massage therapist about Down syndrome.

What it costs

Massage you learn to give your own baby is free. Private massage therapists charge about $60–$120 for 45–60 minutes, and gyms about $50–$90 (CostHelper).

Find a massage therapist in our directory

Approach 6 of 6

MBHA Wellness Coach

Raising a child with Down syndrome brings joy and hard work, and many families are stable, happy and close (Global Down Syndrome Foundation). An MBHA Wellness Coach can help with the everyday side of health at every age — alongside, never instead of, the doctors, therapists and school team.

Healthy weight, activity and sleep

Friendships, independence and safety

Growing up: school, work and adult life

  • The AAP suggests talking in the teen years about school goals and job training, decision-making (such as supported decision-making or guardianship), long-term financial planning, where to live, community-supported work and adult health care (AAP family guide). Got Transition suggests starting health care transition planning at ages 12 to 14 (Got Transition).
  • State vocational rehabilitation programs help people with disabilities prepare for and get jobs, including supported employment, and may offer pre-employment transition services to students (U.S. Department of Education, RSA).
  • More people with Down syndrome are going on to college, and a growing number of colleges have programs designed for them; Think College (thinkcollege.net) lists programs and resources (Global Down Syndrome Foundation).

Connecting with other families

Help paying for care

  • California regional centers: state law counts intellectual disability among developmental disabilities that can qualify for services when it begins before 18, is expected to last, and causes significant limits in three or more life areas; children under 5 can be provisionally eligible. Services can include respite, family training and adaptive equipment (Cal. Welf. & Inst. Code §4512).
  • Medicaid waivers: states run home and community-based services waivers for people who would otherwise need an institutional level of care, and can target groups such as people with intellectual disabilities. Waivers can cover case management, personal care, habilitation and respite, and each state sets the maximum number of people served (Medicaid.gov), so ask early.
  • SSI for children: Supplemental Security Income can help a child whose condition causes marked and severe functional limits expected to last at least 12 months; part of the parents’ income and resources is counted, and in most states a child with SSI can get Medicaid (Social Security Administration).
  • ABLE accounts are tax-advantaged savings accounts for people with disabilities (IRS). Up to $100,000 in an ABLE account doesn’t count against SSI, and the money can pay for education, housing, transportation, health care and more (ABLE National Resource Center).

Another approach

Health checks through life

This summary follows AAP’s family version of its 2022 report (AAP family guide). Your doctor may adjust it, and checks may be needed more often if there are problems. Vaccines follow the same schedule as for any child, plus a yearly flu shot.

  • Before birth: genetic counseling if Down syndrome is found; ask about a fetal heart ultrasound and plan where to deliver.
  • Birth to 1 month: a full exam and, if not already done, a chromosome test; a heart ultrasound (even if one was done before birth); hearing and eye checks by specialists; a thyroid (TSH) test; a blood count; watching feeding and weight gain; and starting to look into early intervention.
  • 1 month to 1 year: TSH at 6 months and 1 year; eyes checked again by 1 year; hearing every 6 months in early childhood; yearly tests for low iron and anemia; watching for seizures, including infantile spasms.
  • 1 to 5 years: hearing every 6 months until each ear tests normal (usually by age 4 to 6); yearly eye exams with a pediatric ophthalmologist; yearly TSH; a sleep study between ages 3 and 4; autism screening; telling the doctor about loose stools, hard-to-treat constipation, slow growth, belly pain or new behavior problems, which can be signs of celiac disease.
  • 5 to 12 years: yearly hearing tests once each ear can be tested; an eye exam at least every 2 years; yearly TSH and iron tests; talk about school, independence, puberty and body safety.
  • 12 to 21 years: yearly hearing tests and eye checks at visits; yearly TSH; a heart ultrasound if new tiredness or shortness of breath appears; planning for adult life and health care.
  • Neck, at every age: X-rays are not needed unless there is pain or a change in function — see the warning signs at the top of this page.
  • Adults: screening for dementia from age 40, for obesity, and earlier and more often for diabetes (Tsou et al., 2020).

Still being researched: Acupuncture. We add each approach once its costs and results are sourced. Are you a practitioner with experience treating Down Syndrome? Tell us.

Member stories

Living with Down Syndrome? Share your experience

Real experiences help others choose. Tell us what you tried — conventional medicine, chiropractic, acupuncture, herbs, massage or coaching — what it cost and what changed.

No stories have been published for this condition yet. Yours could be the first.

Which approaches have you tried?

What did you try, what did it cost, and what changed for you? Please leave out anything you’d rather keep private.

We read every story before it’s published and may shorten it. Stories describe one person’s experience; results vary. See our Privacy Policy.

Sources

This page is for education only and is not medical advice. Costs are typical U.S. ranges and estimates; yours will depend on your provider, location and insurance. Talk with your doctor before starting, stopping or combining any treatment. In an emergency, call 911. See our disclaimer.

Find the right practitioner

Search MBHA’s Health Directory for doctors, chiropractors, acupuncturists and massage therapists across the Monterey Bay.

Search the Directory All Health Conditions

The Monterey Bay Holistic Alliance is a charitable, independent registered nonprofit 501(c)(3) organization and does not endorse any particular products or practices. Claims and statements herein are for informational purposes only and have not been evaluated by the Food and Drug Administration. We strongly recommend that you seek out your trusted medical doctor or practitioner for diagnosis and treatment of any existing health condition. MBHA provides administrative support, education and navigation — not medical, legal or tax advice — and cannot guarantee claim, billing or fundraising outcomes. MBHA is not an emergency service: in an emergency, call 911 or go to the nearest emergency room.