Hemophilia Patient & Family Handbook

may be considered. Some babies with hemophilia may present with bleeding inside the skull (intracranial) after delivery. A head ultrasound should be used to check for any bleeding in the head after delivery. If hemophilia is suspected, circumcision should not be done until laboratory testing is completed. Some babies may be diagnosed with hemophilia if prolonged bleeding occurs after being circumcised or being pricked in the heel for blood tests. Bruising Young children with hemophilia often get bruises as they learn to crawl and walk, though these bruises usually do not need special treatment. Bruises can be seen on the chest or under the arms where caregivers pick them up. Sometimes these children are suspected of having been abused. When this happens, testing of Factor VIII and IX levels can show that the child has hemophilia. Some parents add padding to clothing or use knee/elbow pads to minimize bruising. Minor Cuts and Scrapes Minor cuts and scrapes can be treated with normal first aid, but bleeding inside the body is more of a problem. If a cut is deep enough that stitches or staples are required, factor replacement may be necessary. Joint Bleeding Bleeding episodes happen more often as children become more active. The most common type of bleeding in children with hemophilia is joint bleeding. Children may feel “bubbling” or “tingling” in a joint. Young children may not realize that this is an early sign of bleeding. If they are not treated for the bleed at this point, they will start to feel pain. When children with hemophilia have pain in a joint, they usually try to protect the joint by holding it in a flexed or bent position that is more comfortable. If you touch the area of the body where there is a bleed, it may feel warm to the touch. If the bleed goes on for a long time, you may notice swelling. You may not see any bruising because the bleeding is going on inside the joint. If you are not sure whether your child is bleeding into the joint, do not force them to move the affected arm or leg because this may cause more pain. Sometimes it is helpful to compare the affected limb to the one on the other side.

Muscle Bleeding Bleeding often can occur in the muscles. Early signs of a muscle bleed might include fussiness in an infant

or toddler or a refusal to use one of the arms or legs. You may not see any bruising because the bleeding is inside the muscle. The muscle may feel warm to the touch. Over time, the muscle also can become swollen. Infants and toddlers may develop muscle bleeds in the buttocks because they often fall as they learn to stand and walk. Using two diapers at once for more padding may decrease this type of bleeding. Some caretakers also use a small piece of foam padding tucked into the toddler’s pants. Some muscle bleeding can be more serious. For instance, bleeding into the large muscle in the groin/abdomen (the iliopsoas) is serious. When children

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