Inhibitors can develop in about 15%–30% of persons with hemophilia A and 1%–5% of those with hemophilia B. Although the rate of inhibitors is lower in hemophilia B, patients with severe disease can have serious allergic reactions to factor concentrates when they develop an inhibitor. For this reason, early factor infusions should be given in a medical facility. Inhibitors make treatment more difficult, and other strategies often are needed to stop or prevent bleeding.
n HOW OFTEN WILL MY CHILD NEED TREATMENT? How often your child will need to be treated depends on the severity of the deficiency, which treatment regimens they receive, and the number of bleeds they have. Some Factor VIII products may be given several times a week, others every few days. Some Factor IX products are given several times a week or every week or 2. Nonfactor therapy may be given subcutaneously every week, every 2 weeks, or every 4 weeks. Regardless of the type of treatment (prophylaxis or on demand), suspected bleeding should be evaluated. This is especially true when your child has a head injury. Head injuries are considered emergencies and you should seek medical care immediately. The amount of factor that your child will need depends on the type of bleed and desired increase in factor activity as well as your child’s weight. This depends on the seriousness of the bleed and is calculated using the child’s weight. Some bleeds, like mouth and nose bleeds, can be treated with anti- fibrinolytics such as aminocaproic acid or tranexamic acid. Your child will not need treatment for minor bruises, unless they increase in size and cause pain. Generally, a joint bleed will likely not need a dose as big as one given for a head bleed. If your child is receiving therapy as needed (on demand) and begins to have too many bleeds, your hemophilia care team may want to place your child on prophylaxis. This is the best method known for keeping joints healthy, so it is very important that you keep track of all bleeding episodes. If keeping a diary is difficult for you, speak with your hemophilia team. There are new ways to keep track of bleeds that might make it easier for you. n HOW CAN I WORK WITH MY CHILD’S HEALTHCARE TEAM? HTCs are located in cities across the United States and other countries. The goal of the HTC is to keep your child healthy and strong and to help limit problems from bleeding. The center provides specialty care and is available as a resource to your family’s regular doctor or dentist. They can help prepare your child for surgery or dental extractions. Your child’s HTC healthcare team can provide you with tips for keeping younger children safe. You and your child are also members of the treatment team. The staff needs your help to develop a plan of care that will keep your child healthy, active, and able to live successfully with the challenge of hemophilia. HTCs also can help daycare providers, teachers, coaches, and healthcare providers teach lessons and give out materials about hemophilia at your child’s school. Members of HTC care teams include • hematologists, who specialize in blood disorders • pediatricians, who care for infants, young children, and teenagers • nurses specializing in hemophilia care, who tend to coordinate with the treatment team and are
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