Hemophilia FAQs

Question: My son has been diagnosed with hemophilia. At what age will his first bleed occur?

Answer: First bleeds usually occur around the age of one to two years or when the child becomes more active; however, the age at which this occurs is variable.

Question: How will I know when my child is having a bleed?

Answer: If the child is old enough, he will be able to verbalize that he is having pain or some other abnormal sensation, i.e. burning or a “funny feeling.” If this is the first bleed, your child may be able to tell you that he is experiencing a bleed, or that he has been injured. An infant or small child will usually become fussy or irritable and avoid using the affected area. He may begin to limp while walking, or drag the affected arm or leg while crawling. You may notice redness, swelling or increased warmth at the site. If the bleed is in a muscle or soft tissue, the area will usually feel swollen or tense to the touch in addition to the above symptoms. A bruise may or may not be present. If the child is experiencing a joint bleed, you will most likely notice warmth followed later by swelling and the joint will feel boggy or “mushy” to touch. Palpation of the bleeding area is often painful.

Question: Will my child ever be able to participate in sports?

Answer: We discourage contact sports such as football, wrestling and certain types of martial arts. We encourage children to participate in sports such as swimming, tennis, golf, bicycling, baseball, running or any other low impact physical recreation (appropriate protective gear should always be used, such as bicycle helmets). Children are encouraged to participate in gym class at school. Studies have shown that children who lead an active lifestyle are generally more content, have stronger, healthier muscles and joints, and therefore, are less likely to have chronic bleeding problems.

Question: What do I do when my child has an injury?

Answer: When your child is injured, immediately follow the steps of the RICE protocol (Rest, Ice, Compression and Elevation). If you suspect a bleed, call your local HTC (hemophilia treatment center) to report signs and symptoms to your physician or nurse to receive further instructions. If you infuse at home, administer factor concentrate at the prescribed dosage along with RICE.

Factor should be administered as soon as possible, and no later than 2-3 hours following a bleeding episode. If your child has severe or moderate hemophilia, you need to keep two to four, 40-50% corrections of factor at home at all times. You will also need to make sure you have a travel letter from your physician on hand. (Please contact your HTC if you do not have a travel letter for your child.) If the injury is severe (head/face, neck or abdominal area), take your child to the nearest hospital emergency room (ER) for evaluation and have the ER physician immediately contact your local HTC for treatment recommendations.

Take along at least two doses of factor (40–50% corrections per dose) to the emergency room along with your child’s travel letter. The travel letter should state your child’s diagnosis, name of the factor concentrate your child receives, how to correctly calculate the dose, and instructions on how to mix and infuse the factor. It should also contain information on how to contact the HTC and the HTC physician on call after hours.