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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 and
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,
doctor and/or HTC.
Click on the appropriate age group below to learn more:
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 worldat least his little part
of itis 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 him or her, and they
their thoughts have the power to make things happen. For instance, the
preschooler may think he has to take factor treatment as punishment for
being bad. He
may ignore symptoms of a bleed, thinking if he wishes hard enough, it will
magically go away.
Offer your child easy-to-understand information about hemophilia and remind
your child 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
Avoid threatening the 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
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 starts 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 the 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
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 the 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
As discussed earlier, 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 NHF to get information about activities
and events for teenagers with hemophilia in your area, or ask your HTC
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 his successes
and understanding of his 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 with him calmly about his future goals and
how his current choices help or interfere with reaching those goals. 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 you can enforce.
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The information contained on the NHF web site is provided for your general
information only. NHF does not give medical advice or engage in the practice
of medicine. NHF under no circumstances recommends particular treatment
for specific individuals and in all cases recommends that you consult your
physician or local treatment center before pursuing any course of treatment.
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