child’s abdomen also may be tender when you touch it. If your child has any of these signs or symptoms, you should call their physician immediately.
Head Bleeding Any trauma to the head should be considered an emergency even if there are no symptoms. Symptoms are a late sign of bleeding. Head bleeds also can happen without any known trauma (spontaneously) in children with severe hemophilia. Some signs that you may see are headache, feeling tired, difficulty waking up, or vision changes. Other signs include nausea, vomiting, dizziness, crankiness, seizures, uncoordinated walking, slurred speech, and confusion. Contact your child’s physician about any head trauma before you see symptoms. You also should contact their physician if your child has any of these symptoms even if there is no history of trauma. n WILL THERE BE REGULAR LAB TESTING? Some children with hemophilia make very little, if any, factor protein of their own. The immune system is supposed to get rid of proteins that do not belong. Some children with hemophilia will make antibodies (inhibitors) to the factor protein that we give to treat bleeds. These inhibitors usually show up in the first 10–20 treatments. Some patients with severe Factor IX deficiency may have an allergic reaction to factor replacement as the first sign of an inhibitor. Therefore, children with hemophilia should be screened after every 3–5 exposure days to factor early on and then every year for inhibitors to Factor VIII or IX. An inhibitor test also should be done if your child is not showing improvement when you are treating a bleed or if your child has suspected bleeding despite regular factor replacement (prophylaxis). It is important to make sure that your child receives immunizations to protect them from viruses like Hepatitis A and B that potentially can be transmitted through blood proteins (we recommend talking to your HTC about the route of administration for immunizations—subcutaneous versus intramuscular). There are other viruses for which there are no vaccines available at this time.
Newer-generation products are produced without blood proteins. Some factor treatment products are made from human blood proteins. Other factor treatment products are stabilized in human blood proteins (albumin). Your child may have a screening test every year for Hepatitis C and HIV.
n WHO GETS HEMOPHILIA? Hemophilia is an inherited bleeding disorder. Genes (found in chromosomes) control the traits that each person inherits from their parents. Males have one X chromosome and one Y chromosome (XY). Females have two X chromosomes (XX). This pair of chromosomes determines the sex of the child. Each of these chromosomes contains hundreds of genes. Genes determine a person’s height, eye color, hair color, and blood clotting ability. Hemophilia is something a child is
4
Powered by FlippingBook