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NEWLY DIAGNOSED > PARENTS FAQ


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Parents FAQ 1 | Parents FAQ 2 | Parents FAQ 3

Q. Can my child develop resistance to clotting treatments?
A. A small number of children with hemophilia develop an "inhibitor" or "antibody" to the clotting treatment. An inhibitor destroys the clotting factor before it has a chance to stop the bleeding. The reason inhibitors develop is unknown, but it is not related to the number of treatments your child receives. Inhibitors usually occur in the first 5-10 years of life.

Notify your doctor or HTC if your child does not respond to the usual dose of factor. If your child does develop an inhibitor, your doctor or HTC will work with you to develop a special plan of care. For more information about inhibitors, see "Hemophilia: Current Medical Management," available from NHF.

Q. Are bleeds painful?
A. They can be, especially if not treated right away. Prompt treatment at the first sign of a bleed can keep discomfort from becoming extreme pain.

Q. Is there anything I can do to make my child more comfortable until factor treatment can be started?
A. If the decision is made to infuse factor the most important thing you can do is give it as soon as possible. If there is a delay, however, applying ice can shrink the size of the leaking blood vessels, limit the amount of bleeding into joints or tissues, and prevent a small bruise from becoming a larger one.

To avoid ice burn, place a thin cloth, such as single layer of diaper, between your child's skin and the ice. You can make a larger ice pack by wringing out wet towels, putting them in plastic bags, and freezing them, or you can buy reusable ice packs at most discount stores and pharmacies. A bag of frozen peas or corn can also be used as an ice pack.

While ice can ease your child's discomfort and slow the bleed, it should be used along with factor replacement treatment.

Q. Can I give my child over-the-counter pain medicine?
A. Never give your child any product with aspirin (acetylsalicylic acid) in it. Aspirin can interfere with clotting. Many common household remedies such as Alka-Seltzer contain aspirin, so read labels very carefully before you give your child any medication.

Motrin or ibuprofen may affect platelets and should be used only under a doctor's supervision.

Acetaminophen (sold under the brand names Tylenol and Tempra) is recommended as a safe pain reliever for children with hemophilia. Follow the directions carefully and be sure to give your child only the recommended amount of the medicine. If you have any questions about what is and isn't safe for your child to take, talk to your doctor or HTC.

One final note: if your child has a head injury, or symptoms of a head injury, do not give him any pain medicine unless a doctor tells you it is okay. Pain medicine can mask symptoms and make it difficult for the doctor to make a diagnosis about the seriousness of the injury. Talk to your doctor before there is a crisis, to make a plan for what to do in an emergency. Some doctors want patients to be seen in their offices; others send patients to the closest emergency room. Plan ahead and many problems can be prevented.

Q. Who should know that my child has hemophilia?
A. Anyone who is responsible for taking care of your child should know about his condition. This includes babysitters, teachers, coaches, daycare workers, relatives, parents of playmates, etc. People who take care of your child need to know what hemophilia is and what they should do if a bleed occurs. Make sure the people taking care of your child know how to reach you, your doctor, or your HTC in an emergency. It is recommended that you wear a medical alert bracelet or necklace that identifies your condition and will provide your medical information to healthcare staff in case of an emergency.

Of course, anyone who is giving your child medical or dental care also needs to be aware that your child has hemophilia.

Who or what you tell is up to you and your child. Whatever you decide, it is important to give your child the message his hemophilia is part of who he is, there is nothing to be ashamed of. Consider getting involved in the hemophilia community, where your family will meet others who have successfully integrated hemophilia into their lives.

As you start talking openly about your child's hemophilia, other people may have a wide range of reactions. Some may even be afraid. They may think they can catch hemophilia from your child, or worry your child will bleed to death in seconds if he gets a paper cut! You and your child can help people learn the facts about hemophilia.

Q. Can my child exercise and play sports?
A. Yes. In fact, your child should get plenty of exercise. Activity builds strong muscles to protect the joints.

Some of the more commonly recommended activities for children with hemophilia include swimming, bicycle riding, walking, jogging, tennis, golf, dancing, fishing, sailing, and bowling.

Most experts recommend that boys with hemophilia avoid contact sports because of the higher risk of head and abdominal injuries. These sports include football, hockey, boxing, and wrestling.

You and your child can experiment together to find out which activities work the best for him and for your family. Talk to the HTC staff, especially the physical therapist about appropriate activities for your child. Other parents of boys with hemophilia can be helpful, especially if their sons are older than yours.

Your child may want to try the activities that are popular with his friends. If these activities cause painful bleeding episodes, he will probably give them up in favor of activities that do not cause bleeds.

In the United States there are camps that serve young people with bleeding disorders. These camps provide a way for children to cope with their disorder by being with other kids with bleeding disorders. For a listing of camps across the country, look on the NHF web site at www.hemophilia.org. For more information on the safety of recreational activities, see the NHF publication, "Hemophilia, Sports, and Exercise."

Q. Will my child have to go to a special school?
A. No. Barring learning difficulties, your child belongs in a regular classroom. Meet with your child's teacher before the school year starts to explain your child's condition. Some teachers will be very well-informed, others may be learning about hemophilia for the first time. Staff from your HTC are usually available to talk to teachers by phone or make school visits to explain hemophilia and any related needs.

Your child should be able to participate in all of his classes, including physical education. However, if he experiences frequent bleeds during gym class, your doctor or the physical therapist at the HTC can work with the school to arrange a modified exercise program.

Always make sure the school knows how to contact you, your doctor, or your HTC in an emergency. For more information, "The Student with Hemophilia: A Resource for the Educator" and the "School issues" packet are two excellent NHF resources.






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