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. How can I help my young child during the treatments?
A. Many parents find it difficult to watch their child being stuck with a needle, especially when the child is crying and upset. However it can be helpful if you stay with your child to reassure him during treatment. Here are some pointers:
1. Stay calm. If you are calm, chances are he will be too.
2. If your child needs to be restrained during treatment, have a second medical person hold his arm while you cuddle him and talk softly, reassuring him that the factor will help him feel better.
3. Remind your child that the needle stick will hurt only for a moment, and the factor will make the bleeding stop. It is usually anticipation of the needle stick that upsets children. There are also numbing creams available that help to lessen the pain of the needle stick.
4. Give your child permission to cry or yell when the needle goes in. Avoid shaming him for being upset. Just remind him that his job is to remain still.
5. If the medical person attempting to start the treatment cannot get a needle in the vein after two or three tries, request another nurse or doctor. You have the right to be assertive and demand that another healthcare professional perform the infusion.
6. During the treatment, give your child something else to focus on. Let him hold a favorite toy, read him a story, or have him tell you a story.
7. Give your child praise and encouragement when the treatment is over.
8. As your child gets older, encourage him to participate in the treatments by identifying his injuries, helping to set up equipment, pointing out usable veins, etc.
NHF has an Emergency Department packet of information that provides information on what a parent experiences in the ER and what they can do to make the experience beneficial.
Q. What happens after my child receives a clotting treatment?
A. When clotting factor is administered, it immediately circulates in the blood so the body begins to use it right away to form a blood clot. The factor gets used up at different rates, often referred to as half life, depending on whether your child has factor VIII or factor IX deficiency. At 48 hours after infusion, most of the factor is usually gone. If your child still has pain, stiffness, or other signs of bleeding, he may need more factor.
Once the blood clot is established and the bleeding has stopped, the body begins to reabsorb the blood that has leaked into the tissues and joints. If your child receives clotting factor soon after a bleed starts, the bleeding will stop more quickly, less blood will need to be reabsorbed, and your child will be back to his normal routine faster. Early treatment will minimize the risk of a disabling condition and, if there is a doubt about whether to treat, always decide on the side of treatment.
However, if your child does not receive prompt treatment, extra blood pools in the joints and tissues and causes pain and swelling that takes longer to go away. Often, more than one treatment is recommended to prevent re-bleeding and allow your child's body to heal. Over time, repeated bleeding into a joint can lead to muscle weakness and arthritis.
Your child will probably not require bed rest following most bleeds, but he may need to "tone down" his normal activities for a few days. He may also benefit from support devices, such as crutches following a bleed into the knee joint, or a sling following a bleed into a muscle in the arm. Your hemophilia care givers can help you decide what is right for your child.
Sometimes, the newly formed blood clot dislodges, or the body "breaks down" the blood clot too soon, and the site starts bleeding again. Treatment is the same as described earlier: another factor replacement treatment is administered to form another blood clot.
Q. Will my child always have to go to the doctor or HTC for clotting treatments?
A. It is helpful, at first, to have your child evaluated and treated for each bleed by your doctor or HTC. As he grows, especially if he has severe hemophilia and bleeds frequently, you may learn how to give the factor replacement treatments at home. Most children who receive treatment at home eventually learn how to do the infusions for themselves. Once home treatment is initiated, parents should always make sure to have factor on hand and when traveling; either have the location of a hemophilia treatment center or bring enough factor for the trip.
Many families find home therapy a fast, easy way to treat a child with frequent bleeds. If you have questions, or would like to try home therapy, talk to your doctor or HTC.
Q. Who pays for the clotting treatments?
A. If you have medical insurance, your insurance may cover all or part of the cost. If you don't have medical insurance, or if your insurance does not cover factor treatments, talk with the social worker at the HTC. He or she can help you identify resources to help with the cost of your child's care. Publications on this topic are available through NHF.
Q. Can my child get hepatitis or HIV/AIDS from clotting treatments?
A. In the past, viruses like hepatitis and HIV were passed from blood donors to people with hemophilia through factor treatments.
Today, however, the risks of contracting these viruses through treatments have been almost entirely eliminated by several advances, including:
• Screening of all blood donors for hepatitis and HIV
• Purification and treatment of all human blood products to kill viruses
• Development of recombinant factor replacement (i.e., products that are free of or have no human blood.
To be even safer, it is recommended that all children with hemophilia receive immunizations for hepatitis A and B. There is currently no immunization available to guard against HIV or hepatitis C. It is advised that your child receive an annual checkup at a hemophilia treatment center and be vaccinated against Hepatitis A and B.
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 that his hemophilia is part of who he is and 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. 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 is usually available to talk to teachers by phone or to 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, call HANDI at 800.42.HANDI to request a "School Issues" resource packet.
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. 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. For more information on the safety of recreational activities, see the NHF publication, "Playing it Safe".