Down Syndrome
Treatment Overview
A team of health professionals will direct the treatment for Down syndrome based on your child's unique symptoms and physical problems. By working closely with these health professionals and other care providers, you can help your child become as independent as possible and lead a healthy, meaningful life.
Initial treatment
It is normal to experience a wide range of emotions when your baby is born with Down syndrome. Even if you learned about your baby's condition while you were pregnant, the first few weeks after birth often are very difficult as you learn to cope with the diagnosis.
A confirmed diagnosis of Down syndrome requires a karyotype test. This test usually is done on a sample of your baby's blood if it is done after birth. It may take 2 to 3 weeks to get the complete results of this test. This waiting period can be extremely difficult, especially if earlier test results were uncertain and your baby has only subtle characteristics of Down syndrome.
Your newborn with Down syndrome will have regular checkups and various tests during the first month. These tests are used to monitor his or her condition and to help health professionals look for early signs of common diseases associated with Down syndrome and other health conditions. These checkups also are a good time to begin discussing issues of concern about your newborn.
Ongoing treatment
Making sure that your child has regular medical checkups, helping to manage his or her adjustments to social and physical changes, and promoting independence are important parts of ongoing treatment for Down syndrome.
Physical exams allow your health professional to watch your child for early signs of common diseases associated with Down syndrome and other health conditions. Health professionals look for specific problems at various ages, such as cataracts and other eye conditions during a baby's first year. See checkups and testing during:
- Newborn period (birth to 1 month of age).
- Infancy (age 1 month to 1 year).
- Early childhood (age 1 to 5 years).
- Middle and late childhood (age 5 to 13 years).
- Adolescence and young adulthood (age 13 to 21 years).
- Adulthood.
Talk to your doctor during your child's checkups or any time you have concerns. Many parents of children with Down syndrome express similar concerns according to their child's age.
- Newborn concerns often include getting emotional support and learning where to get more information about Down syndrome. For information about online resources and organizations, see the Other Places to Get Help section of this topic.
- Infant concerns often focus on preventing colds and infections. Also, you might start exploring the types of therapies that might be tried based on how your child grows and develops.
- Early childhood concerns are often related to your child's rate of growth and development, which is typically slower than other children of the same age. You will likely want to address behavior, social skills, diet and exercise, and how to prevent common illnesses.
- Middle and late childhood concerns increasingly focus on gaining independence, social skills, and education.
- Adolescent and young adult concerns often relate to the transition into adulthood and planning for the future, such as where your child will live. Also, issues related to sexuality and relationships may develop.
Loose ligaments in children with Down syndrome make it easy for them to dislocate bones, especially in the neck (atlantoaxial dislocation). Doctors may want to X-ray your child's neck bones, especially if he or she wants to participate in sports. Generally, X-rays are needed only once. Certain sports, such as football, wrestling, or diving, may need to be avoided.
Treatment to teach independence and self-sufficiency is influenced by your child's intelligence level and physical abilities. Although it may take extra time for your child to learn and master skills, you may be surprised at how much he or she will be able to do.
With proper encouragement and guidance, your child can learn the following important skills:
- Walking and other motor development milestones. You can help your baby and young child strengthen muscles through directed play. As your child gets older, you can work with a physical therapist and your doctor to design an exercise program to help your child maintain and increase muscle strength and physical skills.
- Self-feeding. You can help your child learn to eat independently by sitting down together at meals. Use gradual steps to teach your child how to eat, starting with allowing the child to eat with his or her fingers and offering thick liquids to drink.
- Dressing. Teach your child how to dress himself or herself by taking extra time to explain and practice.
- Communicating. Simple measures, such as looking at your baby while speaking or showing and naming objects, can help your baby learn to talk.
- Grooming and hygiene. Help your child learn the importance of being clean and looking his or her best. Establish a daily routine for bathing and getting ready. As your child gets older, this will become increasingly important. Gradually add new tasks to the routine, such as putting on deodorant.
Often different types of therapy, such as speech therapy, can help children with Down syndrome learn necessary skills. These therapies are used throughout life, even during adulthood. The specifics change as your child grows and develops.
When helping your child with Down syndrome achieve independence, it is also important to be aware of his or her vulnerabilities and potential social problems. Although your child can overcome many challenges, he or she will always need support and guidance.
Treatment if the condition gets worse
Children with Down syndrome often are born with or have an increased risk for developing:
- Diseases, such as heart disease.
- Health conditions, such as frequent respiratory infections.
Treatment is specific to the type of disease or health condition that develops. For example, medicines may be used to treat symptoms related to heart disease. Surgery sometimes may be needed to correct problems such as cataracts or bowel obstruction.
Children with Down syndrome also are at risk for:
- Weight problems. A registered dietitian can provide guidance with meal planning and offer helpful diet strategies for your child. Regular exercise is also important. Go for walks with your child and help him or her recognize the importance of being physically active.
- Behavior problems. Although children with Down syndrome are often perceived as being very mild-tempered, they are at risk for developing behavior problems, such as oppositional defiant disorder and autism. Your doctor or a counselor can help you design strategies to improve problem behavior and teach appropriate socialization skills.
- Depression. Watch for signs that your child may be depressed or may be having mood problems, especially during the teen and adult years. Depression often is triggered by a significant change or loss, such as death of a family member or change in a caregiver. Counseling from a licensed therapist can help your child overcome and manage these mental health issues. Sometimes medicines are also used.
What to think about
- Your child may be able to tolerate a high degree of pain before telling about it, and he or she may not be able to describe it very well. The first sign of an illness may be a change in your child's behavior.
- There are several controversial treatments for Down syndrome that circulate through various media and word of mouth. Talk with your doctor about these treatments before using them.
End-of-life issues
The typical life expectancy of people with Down syndrome has nearly doubled in recent decades, from 25 years in 1983 to 49 years in 1997.9 More than half of people with Down syndrome live into their 50s. About 15 out of 100 people with Down syndrome live longer than 68 years.4 In addition, better treatment and well-organized advocacy groups have helped people with Down syndrome to live long and fulfilling lives.
People with Down syndrome have a lower life expectancy than average. But you can help your child stay healthy by scheduling regular checkups. This will help to identify, manage, and monitor any diseases and health conditions that people with Down syndrome have a higher chance of developing.
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| Author: | Debby Golonka, MPH | Last Updated: August 9, 2007 |
| Medical Review: | Adam Husney, MD - Family Medicine Michael J. Sexton, MD - Pediatrics David Smith, MD - Family Medicine | |
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