NHF | Bleeding Disorders Information Center | Newly Diagnosed: parents FAQ 2

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Q. Can bleeding episodes be prevented?
A. In cases of severe hemophilia, doctors sometimes recommend giving regular factor replacement treatments (a therapy called prophylaxis) to prevent most bleeding episodes. The Medical and Scientific Advisory Council of the National Hemophilia Foundation recommends that prophylaxis be considered optimal therapy for children with severe hemophilia A and B. Information for consumers on prophylactic (preventive) treatment is available from NHF. These publications will help prepare you to talk with other parents and with your child's healthcare providers about prophylaxis. Also regular exercise strengthens muscles and protects joints which help to reduce spontaneous bleeding. For more information on exercise contact NHF for the publication, "Hemophilia, Sports, and Exercise."

Q. How are bleeding episodes treated?
A. In general, small cuts and scrapes are treated with regular first-aid: clean the cut, then apply pressure and a band-aid. Individuals with mild hemophilia can use a non-blood product called desmopressin acetate (DDAVP) to treat small bleeds. Deep cuts or internal bleeding, such as bleeding into the joints or muscles, require more complex treatment. The clotting factor missing (VIII or IX) must be replaced so the child can form a clot to stop the bleeding.

Some factor products are made from human blood products such as donated plasma. Others, called "recombinant factor," are made in a laboratory and do not use human blood products. The Medical and Scientific Advisory Council of the National Hemophilia Foundation encourages the use of recombinant clotting factor products because they are safer for your child in avoiding transmission of a virus in the blood supply. Your doctor or your HTC will help you decide which is right for your child. All factor treatments are injected or infused into the child's veins.

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 more quickly. 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. 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 that may help:

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 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. 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 has 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. 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. More information about home therapy is available in the NHF publication Hemophilia: Current Medical Management.

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.

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