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Hemophilia in Children
WHAT YOU NEED TO KNOW:
Hemophilia is a bleeding disorder caused by a problem in your blood's ability to form a clot. Hemophilia causes your child to bleed more and longer than normal. Certain blood cells and substances normally form clots and stop your child from bleeding too much. These include platelets, clotting factors, vitamin K, and fibrinogen. Platelets are a type of blood cell that helps form blood clots. Clotting factors are proteins that work with platelets to clot the blood. Hemophilia usually occurs only in boys.
You have the right to help plan your child's care. Learn about your child's health condition and how it may be treated. Discuss treatment options with your child's healthcare providers to decide what care you want for your child.
Certain blood components, called factor concentrates, may be given to your child. They replace the missing clotting factor in your child's blood. Replacement clotting factor is given so that your child's blood will be able to clot and to stop any bleeding. Clotting factor can come from human blood or be artificial. You may be taught how to give clotting factor to your child at home.
- Demand therapy: Your child receives clotting factor to stop a bleeding episode.
- Preventive therapy: Treatment is given to prevent future bleeding episodes. This therapy is often used to prevent injury to your child's joints. Your child may be started on this therapy as early as 1 to 2 years of age, or after one or more joint bleeds. For severe hemophilia, these factor concentrates may be given regularly. If your child has hemophilia A, he may receive this treatment 3 times a week or every other day. If your child has hemophilia B, he may receive treatment 2 times a week.
- Exercise: Your child must exercise regularly and stay at a healthy weight to help build stronger muscles. Exercise also helps keep your child's muscles flexible and can help prevent damage to muscles and joints. Always check with your child's healthcare provider before your child starts any exercise program.
- Sports: Your child can play sports, but the severity of his hemophilia may limit the type of sports he can play. Do not let your child play contact sports, such as football and basketball. Contact sports increase your child's risk for bruising and bleeding. Talk to your child's healthcare provider about the best sports and activities for your child.
Manage your child's hemophilia:
- Dental care: Keep your child's teeth and gums healthy. Ask your child's healthcare provider if certain therapies or medicines should be given to your child when his teeth get cleaned. The amount of his clotting factor may also need to be increased before he has dental procedures. Talk with your child's healthcare provider before he has any dental work.
- Vaccines: Take your child to his healthcare provider for vaccinations. He may need vaccines for hepatitis A and B. Ask your child's healthcare provider which vaccinations are right for your child.
- Injury protection: You will need to protect your child from injuries that can cause bleeding. Young children who are learning to walk can fall and hit hard items. You may need to pad hard items in your home during this period. Protect your child when he is riding in a car by always having him in a car seat, or use a seatbelt. Your child should always wear a helmet if he rides a bicycle or does other activities where he could get a head injury. He may also need to wear knee and elbow pads to protect his joints from injury during activities.
- Prepare for bleeding episodes: Have the supplies ready that you may need to treat a bleeding episode when your child has one. Have your healthcare providers help you prepare a written emergency plan for how to handle your child's bleeding episodes. The plan should cover care for your child at home and school, and what to do if he has to go to the hospital.
- Learn more about hemophilia: The more you know about hemophilia, the better you will be able to help your child. Ask how you can learn more about your child's condition.
Home treatment for bleeding episodes:
Use the following first aid steps as the first treatment for any bleeding episode. You and anyone else who cares for your child must know how to do first aid if your child starts bleeding. If these measures do not stop the bleeding, other treatments will be needed. The following may reduce bleeding and decrease pain:
- Rest: Have your child sit or lie quietly until the bleeding episode ends.
- Ice: Ice helps decrease swelling and pain. Ice may also help prevent tissue damage. Use an ice pack, or put crushed ice in a plastic bag. Cover it with a towel and place it on the area for 15 to 20 minutes.
- Compression: Apply pressure to the bleeding site. A bleeding joint can be wrapped with tape or an elastic bandage. Ask for more information about elastic bandages.
- Elevation: Position your child so the bleeding area of his body is raised. Raise the area above the level of his heart if possible. Prop the area on pillows to keep it elevated comfortably.
Medical alert identification:
Your school-aged child will need to wear a medical alert jewelry or carry a card that says he has hemophilia. Ask your child's healthcare provider where to get these items.
Hemophilia treatment centers:
Your child may be referred to a hemophilia treatment center in your area. These are clinics that provide care to people with hemophilia and other bleeding disorders. Ask if your child should receive treatment at this type of center.
For support and more information:
- National Heart, Lung and Blood Institute
Health Information Center
P.O. Box 30105
Bethesda , MD 20824-0105
Phone: 1- 301 - 592-8573
Web Address: http://www.nhlbi.nih.gov/health/infoctr/index.htm
- CDC National Center on Birth Defects & Developmental Disabilities, Blood Disorders
1600 Clifton Rd
Atlanta , GA 30333
Phone: 1- 800 - 232-4636
Web Address: http://www.cdc.gov/ncbddd/hbd/default.htm
Contact your child's healthcare provider if:
- You or your child cannot make it to his next visit.
- Your child feels very tired and weak.
- Your child has chills or a fever.
- Your child has nausea, is vomiting, or has a severe headache.
- You have questions or concerns about your child's condition or care.
Seek care immediately or call 911 if:
- Your child has a head injury or a seizure.
- Your child has bleeding from a injury to his throat, neck, or eyes.
- Your child has a bleeding episode that cannot be controlled.
- Your child has chest pain or trouble breathing.
- Your child has many large bruises on his body, or swelling in his joints.
- Your child has joint pain that lasts longer than 3 days.
- Your child has severe hemophilia and has pain in the lower part of his stomach, groin, or lower back.
- Your child is vomiting blood or has blood in his bowel movement.
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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.
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