WHAT YOU SHOULD KNOW:
- Down syndrome is a condition that often leads to learning problems, slow growth, and health problems in children. It is also called Down's syndrome and is caused by a problem in the number of chromosomes. Chromosomes hold the genes, which are pieces of information in the body that tell it what to do or make. Normally, a person has 46 chromosomes arranged in 23 pairs, with 23 chromosomes coming from each parent. With Down syndrome, three copies of chromosome 21 were made instead of two. This is why Down syndrome is also called trisomy 21.
- Children with Down syndrome may have some of the same physical features. Down syndrome children are often short for their age and have floppy (limp) muscles or small heads. They may have upward slanted eyes, a flattened nose, or a small mouth with large tongue. Their hands may be broad with a single deep crease on the palm, and short fingers. Down syndrome may be diagnosed by certain tests that look at the child's chromosomes before or after he is born. Treatment includes helping your child use his abilities to the highest level. This may include physical, occupational, and speech therapies. Some medicines and surgery can control and treat other health problems. With care, treatment, and support, your child may grow up and live just like other people do.
AFTER YOU LEAVE:
- Keep a current list of your child's medicines: Include the amounts, and when, how, and why they are taken. Bring the list and the medicines in their containers to follow-up visits. Carry your child's medicine list with you in case of an emergency. Throw away old medicine lists. Give vitamins, herbs, or food supplements only as directed.
- Give your child's medicine as directed: Call your child's primary healthcare provider if you think the medicine is not working as expected. Tell him if your child is allergic to any medicine. Ask before you change or stop giving your child his medicines.
- Do not give aspirin to children under 18 years of age: Your child could develop Reye syndrome if he takes aspirin. Reye syndrome can cause life-threatening brain and liver damage. Check your child's medicine labels for aspirin, salicylates, or oil of wintergreen.
Ask for more information about where and when to take your child for follow-up visits:
For continuing care, treatments, or home services for your child, ask for information.
- Do not miss your child's medical appointments. Regular check-ups and tests will help caregivers know if your child has problems that need treatment. Your child's health may be better if his problems are found and treated early.
- Ask your child's caregiver for special exercises your child may do. Being active may help your child avoid being overweight. This may also keep him alert and healthy.
- Your child may not be able to join in any contact sports, such as football and basketball. These activities increase your child's chances of injury. Have your child join non-contact sports instead. Keep him from activities that may cause injury to his neck and other bones, such as tumbling and gymnastics.
- Breast feeding and milk formula: Feed your child breast milk or the formula suggested by his caregiver while he is still a baby. Ask his caregiver for more information on feeding your baby. You may also contact the following for more help on breast feeding a Down syndrome child:
- La Leche League International
957 North Plum Grove Road
Schaumburg , IL 60173
Phone: 1- 847 - 519-7730
Phone: 1- 800 - 525-3243
Web Address: http://www.lalecheleague.org
- La Leche League International
- Healthy foods: If your child is older, ask your child's caregiver if he should be on a special diet. Offer your child healthy food from all of the five food groups: fruits, vegetables, breads, dairy products, meats, and fish. Give him foods that are high in fiber and low in calories and fat. Eating healthy foods may help your child feel better and have more energy. It may also help him grow and develop as well as possible and may help keep him from being overweight.
- Foods rich in calcium and vitamin D: Calcium and vitamin D are important for growing strong bones. Give your child foods rich in calcium, such as milk, cheese, broccoli, and tofu. Vitamin D may be found in vegetables and fortified milk, cereal, and bread. Ask your child's caregiver if your child needs to use extra vitamins and minerals, especially calcium and vitamin D.
- Dental care: Make sure that your child regularly brushes his teeth. Take your child to his dentist every six months.
- Eyes and ears care: Have your child's eyes and ears checked often. Eye problems may be helped with surgery or glasses. Many hearing problems may be helped with hearing aids. Your child must be able to see and hear well so he can learn to do things correctly.
- Therapies and special programs: A physical therapist and an occupational therapist may exercise your child's arms, legs, and hands. They may also teach your child skills to take care of himself, such as bathing, dressing, and eating. A speech therapist may work with your child to help him talk or swallow. You may put your child in special learning programs. These programs help Down syndrome babies and children develop and learn how to do things.
- Vaccinations: Take your child to his caregiver for vaccinations (shots). He may need to have all the standard shots, as well as shots against the flu or pneumonia. Ask your child's caregiver which vaccinations are right for your child, and for more information about them.
Working with your child:
- Learn about Down syndrome: The more you know about Down syndrome, the more you can help your child and his needs.
- Teach your child how to do things: Do all the things you would normally do with a baby or child without Down syndrome. Read books and sing to your child. Do activities together that will make your child use his legs, arms, hands, and feet. Do these things over and over again. Be patient and keep your hope up for improvement. Your child, like every child, has a lifetime to learn and grow. Work together as a family and give each other support.
For support and more information:
Having a child with Down syndrome is life-changing for you and your family. Accepting that your child has Down syndrome is hard. You and those close to you may feel confused, angry, sad, afraid, or helpless. As parents, you may blame yourself and think you have done something wrong. These are normal feelings. Talk to your caregivers, family, or friends about your feelings. You may also want to join a support group. Contact the following for more information:
- American Academy of Pediatrics
141 Northwest Point Boulevard
Elk Grove Village , IL 60007-1098
Phone: 1- 847 - 434-4000
Web Address: http://www.aap.org
- National Down Syndrome Congress
1370 Center Drive, Ste 102
Atlanta, GA , 30338
Phone: 1- 770 - 604-9500
Phone: 1- 800 - 232-6372
Web Address: www.ndsccenter.org
- National Down Syndrome Society
New York , NY 10012
Web Address: www.ndss.org
CONTACT A CAREGIVER IF:
- You are having problems feeding your child and you feel he is not getting enough to eat.
- Your child begins to gain too much weight, thinks more slowly, or seems depressed.
- Your child has a fever.
- Your child is short of breath when he is lying down or during exercise or activities.
- Your child cannot make it to the next meeting with his caregiver.
- You have questions or concerns about your child's Down syndrome, health, or care.
SEEK CARE IMMEDIATELY IF:
- Your child has a sudden neck pain and cannot move his arms or legs.
- Your child has trouble breathing all of a sudden.
- Your child is throwing up and is not able to eat or drink.
- Your child is having a seizure (convulsion).
- Your child's lips and fingernails turn blue with activity.
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The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.