A team of health professionals will direct the treatment for 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.
It is normal to experience a wide range of emotions when your baby is born with Down syndrome. While you have joy from your child's birth, you will also need to learn about and care for his or her special health care needs.
A confirmed diagnosis of Down syndrome requires a 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 routine 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 problems. These checkups also are a good time to begin discussing issues of concern about your newborn.
Three important parts of ongoing treatment for Down syndrome are making sure that your child has regular medical checkups, helping to manage his or her adjustments to social and physical changes, and promoting independence.
Physical exams allow your doctor to watch your child for early signs of common diseases associated with Down syndrome and other health problems. Doctors look for specific problems at various ages, such as and other eye conditions during a baby's first year. See checkups and testing during:
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 gettingemotional support and learning where to get more information about Downsyndrome. For information about online resources and organizations, see theOther Places to Get Help section of this topic.
- Infant concerns often focus on preventing colds and infections. Also, you mightstart exploring the types of therapies that might be tried based on how yourchild grows and develops.
- Early childhood concerns are oftenrelated to your child's rate of growth and development, which is typicallyslower than other children of the same age. You will likely want to addressbehavior, social skills, diet and exercise, and how to prevent commonillnesses.
- Middle and late childhood concerns increasingly focuson gaining independence, social skills, and education.
- Adolescent and young adult concerns often relate to the transition into adulthood and planning forthe future, such as where your child will live. Also, issues related tosexuality and relationships may develop.
Loose ligaments in children with Down syndrome make it easy for them to dislocate bones, especially in the neck (). Doctors may want to your child's neck bones, especially if he or she wants to take part in sports. Usually 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 mental 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. Youcan help your baby and young child strengthen muscles through directed play. Asyour child gets older, you can work with a and your doctor to design anexercise program to help your child maintain and increase muscle strength andphysical skills.
- Self-feeding. You can help your childlearn to eat independently by sitting down together at meals. Use gradual stepsto teach your child how to eat. Start with allowing your child to eat withhis or her fingers and offering thick liquids to drink.
- Dressing. Teach your child how to dress himself orherself by taking extra time to explain and practice.
- Communicating. Simple measures, such as looking atyour baby while speaking or showing and naming objects, can help your babylearn to talk.
- Grooming and hygiene. Help your child learn the importance of being clean and lookinghis or her best. Establish a daily routine for bathing and getting ready. Asyour child gets older, this will become increasingly important. Gradually addnew 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 often are born with or have an increased risk for developing:
Treatment is specific to the type of disease or health problem 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 or .
Children with Down syndrome also are at risk for:
- Weight problems. A can give guidance for mealplanning and offer helpful diet strategies for your child. Regular exercise isalso important. Go for walks with your child and help him or her learn theimportance of being physically active.
- Behavior problems. Although children with Down syndrome are often perceived asbeing very mild-tempered, they are at risk for having behavior problems,such as and. Your doctor or a counselor can help you designstrategies to improve problem behavior and teach appropriate socializationskills.
- . Watch for signs that yourchild may be depressed or may be having mood problems, especially during theteen and adult years. Depression often is triggered by a significant change orloss, such as death of a family member or change in a caregiver. Counselingfrom a can help your child overcome andmanage these mental health issues. Sometimes medicines are also used.
What to think about
- Your child may be able to tolerate a highdegree of pain before telling about it. And he or she may not be able todescribe pain very well. The first sign of an illness may be a change in yourchild's behavior.
- There are severalcontroversial treatments for Down syndrome thatcirculate through various media and word of mouth. Talk with your doctor aboutthese treatments before using them.
More than 50 out of 100 people who have Down syndrome live into their 50s. And about 15 out of 100 people who have Down syndrome live longer than 68 years.4 Better treatment and well-organized advocacy groups have helped people with Down syndrome live long and fulfilling lives.
You can help your child stay healthy by scheduling routine checkups. This will help to identify, manage, and monitor any diseases and health problems that people with Down syndrome have a higher chance of developing.
You will face some hard decisions as your loved one nears the end of life. Those decisions will include what kind of care to give, where to get the care, and who will make decisions about the care. If you make arrangements in advance, you can have more time to spend quality time with your family.
If you are caring for a dying loved one, it is important to take good care of yourself also. Get support to help you care for your loved one and to help you prepare for your loss. For more information, see the topics Care at the End of Life and Grief and Grieving.