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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 looseness between the top two neck bones (atlantoaxial instability), and misshapen bones in the upper spine can press on the spinal cord and raise the risk of injury (NICHD (opens in a new tab)). The American Academy of Pediatrics (AAP) tells parents to contact the doctor for new changes in walking or in how the arms or hands are used, a change in bowel or bladder control, neck pain or a stiff neck, a head tilt or holding the head in an unusual way, a change in general function, or weakness. Numbness or tingling, dropping things, clumsiness and bathroom accidents can also be signs (Adult Down Syndrome Center (opens in a new tab)).
Snoring or pauses in breathing during sleep can be signs of sleep apnea, which is common in Down syndrome (CDC (opens in a new tab)). Tell the doctor about snoring, pauses in breathing, waking at night, daytime sleepiness, headaches, or changes in behavior and mood (Adult Down Syndrome Center (opens in a new tab)).
Signs that need a doctor’s visit: children with Down syndrome have a higher chance of leukemia (MedlinePlus Genetics (opens in a new tab)). 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 (opens in a new tab)). Infections can be more serious in people with Down syndrome, so even seemingly minor infections should be treated quickly and watched closely (NICHD (opens in a new tab)).
Be wary of “cures”. There is no single, standard treatment for Down syndrome; care is built around each person’s needs (NICHD (opens in a new tab)). Nutritional supplements are the most common alternative therapy families try, but well-designed studies are lacking (Roizen, 2005 (opens in a new tab)). A randomized trial in 156 babies found no evidence to support antioxidant or folinic acid supplements (Ellis et al., BMJ, 2008 (opens in a new tab)), and a review of 11 trials found no supplement or drug that improved thinking or development (Salman, 2002 (opens in a new tab)). NICHD notes that many trials of amino acid supplements were poorly controlled and found side effects (NICHD (opens in a new tab)). 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 (opens in a new tab)). Talk with your doctor about any supplement or new treatment you are considering (NCCIH (opens in a new tab)).
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 (opens in a new tab)). People with Down syndrome can lead healthy lives with supportive care (CDC (opens in a new tab)). It is named after John Langdon Down, the first doctor to describe it systematically (NICHD (opens in a new tab)).
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 (opens in a new tab)).
Three types
The physical features and behaviors are similar in all three types (CDC (opens in a new tab)):
- Trisomy 21 — every cell has three separate copies of chromosome 21. About 95 percent of people with Down syndrome have this type (CDC (opens in a new tab)).
- Translocation Down syndrome — an extra part or whole chromosome 21 is attached (“translocated”) to a different chromosome; about 3 percent (CDC (opens in a new tab)). There are no distinct differences in thinking or health compared with trisomy 21 (NICHD (opens in a new tab)).
- 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 (opens in a new tab)).
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 (opens in a new tab)). It occurs in all ethnic and economic groups (NICHD (opens in a new tab)).
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 (opens in a new tab)). It has nothing to do with race, nationality, religion, income, or anything the mother or father did during pregnancy (Global Down Syndrome Foundation (opens in a new tab)).
- 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 (opens in a new tab)).
- Family history: parents who have one child with Down syndrome have a higher chance of having another, regardless of age (CDC (opens in a new tab)). 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 (opens in a new tab)). A genetic counselor can explain the chances in future pregnancies (NICHD (opens in a new tab)).
Prenatal screening and diagnosis
Whether to have prenatal tests is your choice. You and your provider can talk about the risks and benefits of each test and the information it can give, and then decide which ones are right for you (MedlinePlus (opens in a new tab)). Screening for Down syndrome is recommended to be offered to everyone who is pregnant, regardless of age or risk (MedlinePlus (opens in a new tab)), and pregnant women of all ages can choose to skip screening and have a diagnostic test first (NICHD (opens in a new tab)).
- Screening tests estimate the chance that a baby has Down syndrome; they cannot diagnose it. They include first-trimester screening with a blood test and an ultrasound of the fluid behind the baby’s neck (weeks 10 to 13), the second-trimester “quad” blood test (weeks 15 to 20), combined screening, and cell-free DNA screening of the pregnant person’s blood, which is the most accurate screening test and can be done from 10 weeks. A positive screen means a higher chance, not a diagnosis, and a negative screen cannot guarantee the baby won’t have Down syndrome (MedlinePlus (opens in a new tab)).
- Diagnostic tests — chorionic villus sampling (CVS, usually 10 to 13 weeks) or amniocentesis (usually 15 to 20 weeks) — check cells from the placenta or the fluid around the baby and can usually tell whether the baby has Down syndrome. Both are safe but carry a slight risk of miscarriage (MedlinePlus (opens in a new tab)).
- 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 (opens in a new tab)). Neither screening nor diagnostic tests can predict the full impact of Down syndrome on a child (CDC (opens in a new tab)).
Even when a condition can’t be treated before birth, knowing early gives families time to learn about it and prepare for the baby (MedlinePlus (opens in a new tab)). A genetic counselor can help you weigh the pros and cons of testing, before testing and again after the results, and explain what the results mean (MedlinePlus (opens in a new tab)). Some heart differences can be seen before birth, though heart testing after birth is more accurate (NICHD (opens in a new tab)).
Features and strengths
Each person with Down syndrome is different (NICHD (opens in a new tab)). 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 (opens in a new tab)); still, people with Down syndrome look more like their own family members than like each other (Global Down Syndrome Foundation (opens in a new tab)). Learning and speech usually develop more slowly, and intellectual disability is usually mild to moderate (MedlinePlus Genetics (opens in a new tab)), with a wide range of abilities that can’t be predicted ahead of time (Global Down Syndrome Foundation (opens in a new tab)).
Many children with Down syndrome understand language and want to communicate before they can speak (NICHD (opens in a new tab)). With appropriate support and treatment, many people with Down syndrome lead happy, productive lives (NICHD (opens in a new tab)). 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 (opens in a new tab)).
Health conditions to watch
Not every person will have serious health problems, and many associated conditions can be treated (NICHD (opens in a new tab)). Conditions that are more common include:
- Heart defects present at birth, in 50 to 65 percent of babies; some need surgery, and some milder ones go away as the child grows (CDC (opens in a new tab)).
- Hearing loss (up to 75 percent), ear infections (50 to 70 percent) and eye problems such as cataracts (up to 60 percent) or needing glasses (50 percent) (CDC (opens in a new tab)).
- Obstructive sleep apnea, in 50 to 75 percent (CDC (opens in a new tab)).
- Underactive thyroid (hypothyroidism), reflux and celiac disease (MedlinePlus Genetics (opens in a new tab)); see our Celiac Disease guide.
- Atlantoaxial instability — extra movement between the top two neck bones. It is much more common in Down syndrome because ligaments and connective tissue are “stretchier,” making joints looser (Adult Down Syndrome Center (opens in a new tab)).
- Leukemia, in a small percentage of children (MedlinePlus Genetics (opens in a new tab)), and other blood differences such as anemia (NICHD (opens in a new tab)).
- Infections, especially pneumonia in the first year, and epilepsy; seizures usually start either in the first 2 years of life or after age 30 (NICHD (opens in a new tab)).
- Alzheimer’s disease in adulthood (see below).
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 (opens in a new tab)).
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 (opens in a new tab)). NIH now puts life expectancy at about 60 years, up from 25 in 1983 (NICHD (opens in a new tab)). 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 (opens in a new tab)).
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 (opens in a new tab)). 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 (opens in a new tab)). 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 (opens in a new tab)). 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.
| Approach | What it involves | Estimated cost | What 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 between ages 3 and 4, celiac and neck checks by history and exam; 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. Cash prices for a sleep study vary widely: online providers advertised physician-reviewed home sleep apnea tests at about $99 to $464.50 (median $189), while the median published hospital cash price for an overnight lab study was about $2,949 (The Pricer, updated October 22, 2026). For people on Medicare, Part B covers Type I–IV sleep tests for those with signs and symptoms of sleep apnea, and medically necessary outpatient speech-language pathology with no limit on what Medicare pays in a calendar year; after the Part B deductible you pay 20% of the Medicare-approved amount for each. Still unpriced: heart ultrasound, thyroid blood tests, hearing and eye exams, surgery and specialist visits. Other costs: being researched. | Down syndrome is lifelong. Regular checks catch treatable problems early, early intervention improves outcomes, and 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: one national chain’s memberships run about $70–$90 a month for one 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. | Included with a paid MBHA membership: a monthly wellness coaching email from a certified Holistic Health & Lifestyle Coach and a complimentary Clarity Call (based on availability). Membership is $150 a year for one adult ($15 a month if billed monthly), $200 a year for a couple and $250 a year for a household with dependents; the free tier has occasional email tips only. Members also get discounted rates on one-on-one coaching and group programs (current rates are not published on the membership page, so ask MBHA). Coaching is educational and motivational, not healthcare. Many supports named here — early intervention, Parent Centers, family organizations — are free. | Supports — never replaces — your family’s doctors, therapists and school team. |
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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 (opens in a new tab)). 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 (opens in a new tab)), sets out checks by age; the main ones are summarized under “Health checks through life” below. Care may include a pediatric cardiologist and a pediatric eye specialist from the newborn period, and regular hearing tests (NICHD (opens in a new tab)).
2. Treating related conditions
- Heart: some heart defects need surgery, sometimes in the first days of life; others are minor (NICHD (opens in a new tab), CDC (opens in a new tab)).
- Thyroid: an underactive thyroid can be treated with thyroid hormone taken by mouth (NICHD (opens in a new tab)).
- Hearing and vision: ear infections should be treated quickly to protect hearing, many inherited hearing problems can be corrected, and glasses, surgery or other treatments usually improve vision (NICHD (opens in a new tab)).
- Sleep apnea: treatment may mean removing the tonsils or using a CPAP machine (NICHD (opens in a new tab)); a positive airway pressure device (CPAP or BiPAP) is prescribed most often, and other options exist (Adult Down Syndrome Center (opens in a new tab)).
- Celiac disease is more common in people with chromosomal conditions such as Down syndrome (NIDDK (opens in a new tab)), and doctors treat it by helping people follow a gluten-free diet (NIDDK (opens in a new tab)); see our Celiac Disease guide.
- Atlantoaxial instability: when there are symptoms, testing can include neck X-rays, an MRI or a CT scan, and referral to a neurosurgeon or orthopedic surgeon; surgery is usually recommended when there are symptoms or signs of spinal cord pressure (Adult Down Syndrome Center (opens in a new tab)). Tell every surgical and anesthesia team about Down syndrome: certain movements during anesthesia or surgery could cause permanent injury (NICHD (opens in a new tab)), and neck precautions are recommended for every person with Down syndrome having anesthesia (Adult Down Syndrome Center (opens in a new tab)).
- Leukemia is treated with chemotherapy based on the child’s risk group; children with Down syndrome may have more side effects and may need adjusted treatment (National Cancer Institute (opens in a new tab)).
- Behavior and mental health: anxiety, depression, attention problems, repetitive movements, autism and social withdrawal can occur, and children with Down syndrome may find it harder to cope, especially in adolescence. Treatment may include working with a behavioral specialist and medicines (NICHD (opens in a new tab)).
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 (opens in a new tab)).
- Early intervention can begin shortly after birth, and research shows it improves outcomes for children with Down syndrome (NICHD (opens in a new tab)). Every state has a program; it is free or reduced-cost for eligible children, and a doctor’s referral is not needed (CDC (opens in a new tab)). 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 (opens in a new tab)).
- From age 3: IDEA Part B covers a free appropriate public education in the least restrictive environment (ECTA Center (opens in a new tab)), planned in an Individualized Education Program (IEP). Learning alongside children without disabilities has become much more common (NICHD (opens in a new tab)).
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 (opens in a new tab)). Only about 5 percent of U.S. adults with Down syndrome have access to specialty clinics, so many rely on primary care doctors (NDSS (opens in a new tab)) — 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 (opens in a new tab)). Watch for loss of independent living skills, and ask about a neurology referral for early signs of dementia such as a decline in function or memory loss (NDSS (opens in a new tab)).
- 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 (opens in a new tab)). NIH’s INCLUDE project and the DS-Connect registry support research, including clinical trials (National Institute on Aging (opens in a new tab)).
What it costs
- Early intervention: free or reduced-cost for eligible children (CDC (opens in a new tab)).
- School services: free under IDEA (ECTA Center (opens in a new tab)).
- Medicaid: children under 21 enrolled in Medicaid are entitled to EPSDT, which covers medically necessary care (Medicaid.gov (opens in a new tab)). 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 (opens in a new tab)), and therapies can be used in early intervention and throughout life to promote the greatest possible development and independence (NICHD (opens in a new tab)).
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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 (opens in a new tab)). Neck X-rays are not recommended to screen people without symptoms, and spinal precautions are advised for everyone with Down syndrome during anesthesia, whether or not instability is known (Adult Down Syndrome Center (opens in a new tab)); doctors take care with neck movements even during surgery (NICHD (opens in a new tab)).
- 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 (opens in a new tab)).
- Neck pain, a head tilt or changes in walking, hand use, or bowel or bladder control are reasons to call the doctor, not to see a chiropractor (Adult Down Syndrome Center (opens in a new tab)).
- 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.
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Herbal medicine
No herb, vitamin or supplement has been shown to treat Down syndrome or improve learning (Salman, 2002 (opens in a new tab), Roizen, 2005 (opens in a new tab)).
What the research says
- In a randomized trial of 156 babies with Down syndrome, daily antioxidants, folinic acid or both did not improve development or language compared with placebo (Ellis et al., BMJ, 2008 (opens in a new tab)).
- A systematic review of 11 trials of supplements and drugs found none that improved thinking or motor development; the author said families should be actively discouraged from these “miracle drugs” outside well-designed trials (Salman, Eur J Paediatr Neurol, 2002 (opens in a new tab)).
- For adults, antioxidants studied for dementia in Down syndrome appeared safe but did not work (NICHD (opens in a new tab)).
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 (opens in a new tab)).
- Some needs are real and medical: the AAP recommends yearly blood tests for anemia and iron deficiency starting at age 1 (Adult Down Syndrome Center (opens in a new tab)), and anemia may need treatment and monitoring (NICHD (opens in a new tab)). Ask your child’s doctor before giving any vitamin or supplement (NCCIH (opens in a new tab)). 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 (opens in a new tab)).
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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 (opens in a new tab)).
- 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 (opens in a new tab)).
- Well-designed studies of alternative therapies in Down syndrome, including massage, are lacking (Roizen, 2005 (opens in a new tab)). 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 (opens in a new tab)). Because of possible neck instability (Adult Down Syndrome Center (opens in a new tab)), 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. At one national chain, memberships run about $70–$90 a month for one 60-minute session, and nonmember prices for a 60-minute massage at three of its locations ranged from $125 to $160 (The Pricer (opens in a new tab)).
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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 (opens in a new tab)). 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
- Like other people, people with Down syndrome benefit from regular physical activity and social activities (NICHD (opens in a new tab)). Adults should be screened for obesity (Tsou et al., 2020 (opens in a new tab)). Keeping people without neck symptoms out of sports is unlikely to prevent serious injury and can harm physical and emotional health, though some activities carry more risk (Adult Down Syndrome Center (opens in a new tab)).
- Regular physical activity is crucial for health and independence for people with disabilities; CDC suggests being active every day and eating healthy foods in healthy portions (CDC (opens in a new tab)). For adults, some activity is better than none (CDC (opens in a new tab)). Special Olympics offers more than 30 Olympic-type sports and Unified Sports teams (Special Olympics (opens in a new tab)). Some sports carry a higher risk of neck injury, so talk with the doctor about precautions (NICHD (opens in a new tab)).
- Routines help children know what to expect — for example, a regular bedtime routine (CDC (opens in a new tab)). A coach can help you keep a sleep diary of snoring or restless sleep to share with the doctor, since sleep apnea is common (CDC (opens in a new tab)).
Friendships, independence and safety
- Occupational therapy teaches self-care skills such as eating and getting dressed (NICHD (opens in a new tab)), and a coach can help you practice them at home. Health, abuse-prevention and sexuality education are part of Down syndrome care guidelines (NDSS (opens in a new tab)).
Growing up: school, work and adult life
- Got Transition suggests starting health care transition planning at ages 12 to 14 (Got Transition (opens in a new tab)). In high school, an occupational therapist can help teens find jobs and skills that match their interests and strengths (NICHD (opens in a new tab)).
- For decisions in adult life, families can look at options besides guardianship, such as a power of attorney or supported decision-making, which can suit adults who make their own choices with help from trusted people (Adult Down Syndrome Center (opens in a new tab)).
- 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 (opens in a new tab)).
- 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 (opens in a new tab)).
Connecting with other families
- Asking other families of children with Down syndrome in your area is one of the best ways to find a good health care professional, and online parent groups and local Down syndrome organizations offer support (NDSS (opens in a new tab)). National groups include the National Down Syndrome Society, the Global Down Syndrome Foundation, the National Association for Down Syndrome, GiGi’s Playhouse and the Down Syndrome Resource Foundation (CDC (opens in a new tab)).
- Parent Centers — nearly 100 across the U.S. — help parents of children and youth with disabilities, from birth to 26, take part effectively in their children’s education and development (Center for Parent Information and Resources (opens in a new tab)).
- Families can join DS-Connect, NIH’s confidential online registry, to learn about research (National Institute on Aging (opens in a new tab)).
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 (opens in a new tab)).
- 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 (opens in a new tab)), 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 (opens in a new tab)).
- ABLE accounts are tax-advantaged savings accounts for people with disabilities (IRS (opens in a new tab)). 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 (opens in a new tab)).
Another approach
Health checks through life
This summary draws on NIH, on the Adult Down Syndrome Center’s descriptions of the AAP’s 2022 report (Bull et al., 2022 (opens in a new tab)), and on the adult guideline. Your doctor may adjust it, and checks may be needed more often if there are problems. Children with Down syndrome need the same routine care and vaccines as other children (NICHD (opens in a new tab)).
- Before birth: talk with a genetic counselor before and after testing (MedlinePlus (opens in a new tab)); some heart differences can be seen before birth (NICHD (opens in a new tab)).
- Newborn: a blood test that counts the chromosomes confirms the diagnosis (NICHD (opens in a new tab)). The AAP recommends a heart ultrasound (echocardiogram) and a pediatric cardiologist’s exam, a hearing screen at birth, and an exam by a pediatric eye specialist; a thyroid check is recommended at birth, and because some state newborn screens measure only T4, a TSH test may also be needed. Low muscle tone can make feeding hard, and breastfeeding experts and pediatric nutritionists can help (NICHD (opens in a new tab)). Early intervention can begin shortly after birth (NICHD (opens in a new tab)).
- Infancy and childhood: a thyroid check at 6 months and then every year (NICHD (opens in a new tab)), at least yearly up to age 21 (Adult Down Syndrome Center (opens in a new tab)); regular follow-up hearing and vision exams; a first dental visit within 6 months of the first tooth or by age 1 (NICHD (opens in a new tab)); yearly blood tests for anemia and iron deficiency from age 1 (Adult Down Syndrome Center (opens in a new tab)); and screening for sleep apnea between ages 3 and 4 (Adult Down Syndrome Center (opens in a new tab)).
- Celiac disease, at every visit: the AAP recommends checking for celiac symptoms through history and exam rather than routine blood tests; symptoms lead to further testing (Adult Down Syndrome Center (opens in a new tab)).
- Neck, at every age: a careful history and exam at every well-child visit, with no screening X-rays for children without symptoms, and a talk with parents at least every 2 years about protecting the neck during anesthesia, surgery or X-rays (Adult Down Syndrome Center (opens in a new tab)) — see the warning signs at the top of this page.
- Teens: start planning the move to adult health care at ages 12 to 14 (Got Transition (opens in a new tab)).
- Adults: screening for dementia from age 40, for obesity, and earlier and more often for diabetes (Tsou et al., 2020 (opens in a new tab)); a thyroid (TSH) test every 1 to 2 years from age 21 (Adult Down Syndrome Center (opens in a new tab)); and a hearing check every 1 to 2 years (Adult Down Syndrome Center (opens in a new tab)).
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.
General wellness
Everyday comfort, sleep and energy
Parents and caregivers often ask what they can do day to day to help a child feel comfortable, sleep well and have energy. The points below come from CDC. They are general wellness habits, not treatments for Down Syndrome, and they do not replace your child’s doctor. They are not personal stories or testimonials.
- Sleep. CDC says the hours of sleep a child needs change with age, for example 9–12 hours a day for ages 6–12 and 8–10 hours for teens, and suggests a regular bedtime and wake-up time, turning off electronic devices at least 30 minutes before bed, and avoiding caffeine in the afternoon and evening (CDC (opens in a new tab)). Talk to your child’s provider if sleep problems continue.
- Active play. CDC says children 3 to 5 need to be active throughout the day and children 6 to 17 need at least 60 minutes of activity a day (CDC (opens in a new tab)). Ask your child’s doctor what kind and how much is right, especially if your child has a medical or movement condition.
Please note: MBHA makes no medical claims. Results vary. Never stop or change a prescribed medicine for a child without talking to the doctor, and see a doctor about severe or lasting symptoms.
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Sources
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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.
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