Raising a child is one of life's major challenges. A child with hemophilia adds even more complexity. This section answers some frequently asked questions and encourages parents to trust their instincts. For more information or to find out how to contact other parents of affected children, call NHF at 800-42-HANDI.
Always remember that "normal" is different for each child. If you have concerns about your child's development, talk with his child care providers, teachers, doctor and/or HTC.
Crying is one of the ways your baby communicates. Before long, you will be able to tell the difference between "hungry" cries, "sleepy" cries, "wet" cries, etc. Pay special attention to the "hurt" cries. Spontaneous bleeds are rare in infants, but when they do occur, they cause discomfort. When this happens the baby cries, is fussy, and avoids the hurt limb. If you think your baby has a bleed, consult your doctor or HTC.
During infancy, babies learn whether to trust the world. Every time he is fed when he is hungry, comforted when he is scared or hurt, and changed when he is wet, he learns the world is safe and the people around him are looking out for him. When you attend to your crying baby, you are giving him what he needs, teaching him the world—at least his little part of it—is a friendly place that hears and responds to him.
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Preschool children are egocentric and possess "magical thinking." In other words, they think everything happens because of them, and they think their thoughts have the power to make things happen. For instance, a preschooler may think he has to take factor treatment as punishment for being bad. He may ignore symptoms of a bleed, thinking that if he wishes hard enough, it will magically go away.
Offer your child easy-to-understand information about hemophilia and remind him that factor treatments stop the bleeding and help him feel better. Explain how the treatments make the pain go away so he can play and have fun again.
Avoid threatening your child with factor treatment, e.g. "If you don't cut that out you'll have to get a shot." Instead, help your child understand that some activities are more likely than others to cause bleeding. Even though a preschool child can tell you if he is hurting, it is still important to keep an eye on him for symptoms of bleeding such as limping, holding one limb in a "bent" position, etc.
During the preschool years, you can save your child and yourself a lot of frustration by avoiding questions with "yes" or "no" answers, when there is no choice. For instance, rather than asking your child, "Shall we go to the doctor for your treatment?" you might say, "We are going to the doctor to stop the bleed so you'll feel better. Which toy or lap activity would you like to take to the doctor's office?"
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By the time they reach school age, children are generally capable of thinking logically and seeing cause and effect. A school aged child will be able to report when he has a bleed. He will also start to understand that certain activities are more likely to cause bleeds than others and can be encouraged to be cautious about those activities.
At this age, the child also start to worry about adult feelings. If you react to his bleeds with anger, fear, and frustration, he may try to "protect" you by not telling you he is bleeding until the pain becomes hard to bear.
Respond to bleeds in a matter-of-fact, reassuring way. For instance, you might say to your child, "I'm sorry you're hurt, and I'm glad you told me you had a bleed. Let's get your treatment started so you can feel better soon."
During this stage, it can be especially easy for parents to set too few or too many limits. Permissive parents may feel sorry for their child and try to "make it up to him" by not setting appropriate limits. Protective parents may set too many limits and monitor their child's every move in an effort to keep him safe. School-aged children need both clear and consistent rules and the freedom to develop their own interests and abilities. For instance, establish a rule that your child and his playmates may not hit each other. As long as no one is hitting, avoid jumping in to settle every argument that comes up. Let your child experiment with different ways to resolve conflict.
School-aged children with hemophilia belong in regular classrooms and take part in almost every activity with peers.
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By the time he is a teenager, your child will probably know almost as much about hemophilia as you do. If he is on a home treatment program, he is doing his own factor infusions. He may ask to go to doctor's appointments alone or to speak privately with the care team. If he doesn't ask, offer him the opportunity, so he learns to take increasing responsibility for his own health.
During his teenage years, your son is trying to figure out who he is and what he wants in life. The opinions of his friends are very important to him. He may be upset if his friends think the factor treatments are "gross" or tease him for choosing not to participate in some activities. Having friends his age in the hemophilia community helps him feel less different. Contact your HTC or the local chapter of the National Hemophilia Foundation to get information about activities and events for teenagers with hemophilia in your area, or ask your HTC to put you in touch with other families who have teenagers with hemophilia.
Help your son by offering a sympathetic ear. Listen to what he says without challenging him or telling him how to feel. Be supportive of successes and understanding of disappointments and failures.
If your teenager seems unusually upset, if his behavior changes dramatically, or if he talks about wanting to hurt or kill himself or someone else, professional counseling is in order. Talk to trusted friends, the social worker at the HTC, or ask your doctor for a referral to a counselor who is skilled in working with teenagers.
Most teenagers go through a risk-taking stage when they feel as if nothing bad can happen to them. If your teenager seems to be taking a lot of chances with his health, try to talk calmly with him about his future goals and how his current choices help or interfere with reaching those goals. Try to work together to come up with acceptable alternatives and compromises. If no compromise is possible, and you decide to forbid the risky behavior, set clear limits and consequences that you can enforce.