Down Syndrome: How to Care for Your Child

Children with Down syndrome, also called trisomy 21, have certain health problems and delays in physical and mental development. Working closely with your care team, you can help your child lead a healthy life.

Kids with Down syndrome may have:

• Delays in: 

  • development like sitting up, crawling, walking, and speaking

  • learning 

  • growth

  • self-care skills like feeding, dressing, and toilet teaching

• Medical problems like:

  • heart defects

  • low thyroid function (hypothyroidism)

  • low muscle tone (hypotonia), leading to sucking and feeding problems, as well as constipation and other digestive issues

  • spine problems

  • hearing and vision problems

  • seizures

  • breathing problems

Many of these health problems can be treated. Specialists who care for kids with Down syndrome include:

• a heart doctor (cardiologist)

• an ear, nose, and throat doctor (ENT or otolaryngologist)

• a hearing specialist (audiologist)

• an eye doctor (ophthalmologist)

• a physical therapist (PT), an occupational therapist (OT), and a speech therapist

Some hospitals or health centers have doctors who specialize in Down syndrome.

Medical Care

• Kids with Down syndrome need to have checkups on their health, growth, and development regularly. Schedule all follow-up visits with your child's care team (including your primary health care provider, therapists, and other specialists) as your health care team suggested.

• Keeping track of appointments, test results, and any questions can be hard. Using a notebook, binder, or app will make it easier.

• Make sure you know which medical tests (like blood tests) your child needs to have each year. Schedule all tests as directed.

• Schedule the vaccines your child needs.

Education and Development

• Many states provide free early-intervention services to kids with disabilities from birth to age 3. Check with your health care team or a social worker to learn what resources are available in your area.

• When your child turns 3 years old, they are guaranteed educational services through the Individuals with Disabilities Education Act (IDEA). Under IDEA, local school districts must provide "a free appropriate education in the least restrictive environment" and an individualized education program (IEP) for each child.

• As your child gets older, there will be many milestones, such as switching schools and gradually becoming more independent and taking care of themselves. Talk to your health care team about what's going well and any concerns you'd like to address.

Activities

• Physical activity is important for your child, so make sure they get daily active play. Talk to your health care provider before letting your child play sports, especially sports with risk of spinal injuries. To avoid spine injuries, don't let your child use a trampoline or a bouncy house.

Getting Support

• Your care team is there to support your child, you, and your family.

• Talking with other parents of kids with Down syndrome may help you as you look toward the future. Many parents find that learning as much as they can helps ease fears and worries.

• You also can find support, resources, and more information at the National Down Syndrome Society's website, www.ndss.org.

• Kids with Down syndrome may be more at risk of being bullied or have trouble making friends. If you think your child is having trouble at school, talk to the teacher or the school counselor. It might also help for your child to meet with a therapist.

Your child has:

• unexplained fevers or rashes

• fast breathing or a bluish color to the skin

• a change in bowel movements (poop), such as diarrhea or constipation

• a change in bladder habits (peeing more often or less often than usual)

• weight loss

• sleep issues, such as snoring, pauses in breathing while asleep, or being sleepy during the daytime

• a head tilt, neck pain, changes in walking or arm movements, numbness anywhere from the neck down