Infancy
Most families find out about their child's
diagnosis shortly after birth. Even for
families who may be familiar
with thalassemia, it can be a difficult time.
Adapting to a new diagnosis can be
challenging. You will be lots of new information and meeting
lots of new health
care. Expect your
child to achieve normal
developmental milestones.
What you can do:
1. Use your support network. Talk with family and friends that are useful in the past. You may even in part of your support network to bring when you see the doctor. If you have someone with your child's illness do not know, think about asking your doctor's office to set to a different family.
2. It is good to ask questions and to more than once to ask. Try to pay attention to how you manage information, some families prefer to provide information in writing, some families prefer less information at once to hear. If you know your favorite, share it with your health care.
3. Take care of yourself. Your ability to care for your child directly related to how you do. Take time to relax, take part in fun activities and enjoy the new family member.
What you can do:
1. Use your support network. Talk with family and friends that are useful in the past. You may even in part of your support network to bring when you see the doctor. If you have someone with your child's illness do not know, think about asking your doctor's office to set to a different family.
2. It is good to ask questions and to more than once to ask. Try to pay attention to how you manage information, some families prefer to provide information in writing, some families prefer less information at once to hear. If you know your favorite, share it with your health care.
3. Take care of yourself. Your ability to care for your child directly related to how you do. Take time to relax, take part in fun activities and enjoy the new family member.
Toddlerhood
Children at this age is the test of their environment that
they can do
and test their
parents for what they
are allowed to do. Children are
unable to fully understand
why they need to
go to the hospital, and why the
things that are uncomfortable
to have them
(needle sticks, examinations). You can find increased resistance to invasive procedures like
blood transfusions or draw. If your child is on chronic transfusions,
you can start using Desferal during this
time at home. It
can be hard to
make your own child to love, both physically and emotionally.
If your child attends daycare, you will need to think about the kind of information you feel comfortable sharing about your child's illness.
What you can do:
1. Medical play can help your child to medical procedures to master. Have a child life specialist in psychosocial provider or hospital in your work with your child for medical game. It can also be useful to a toy medical bag at the house.
2. During procedures or IV to help your child manage stress by distracting them with books, songs toys.
3. Talk with your health care over what you share with daycare centers, babysitters, etc..
4. Continue Age appropriate behavior from your child to expect and fear not set limits.
If your child attends daycare, you will need to think about the kind of information you feel comfortable sharing about your child's illness.
What you can do:
1. Medical play can help your child to medical procedures to master. Have a child life specialist in psychosocial provider or hospital in your work with your child for medical game. It can also be useful to a toy medical bag at the house.
2. During procedures or IV to help your child manage stress by distracting them with books, songs toys.
3. Talk with your health care over what you share with daycare centers, babysitters, etc..
4. Continue Age appropriate behavior from your child to expect and fear not set limits.
School Years
Children during
this year they look for good in math, reading, sports, arts, help around the
house, etc.. The need for a sense of mastery also extends to a child's illness.
Children will want more control over the procedures and have many more questions
about why the procedures and tests done. School children are more to look at their
peers to determine their competency in the academic and social arenas. Children
will begin to notice things that their peers do not come to the hospital, as
they do and ask questions about this. As children get older, their cognitive development
change, and they have a different understanding of themselves and their environment.
You can ask the same questions many times.
What you can do:
1. Help your child something they are good to encourage their interests.
2. Try to make your child more choices, and thus control over their medical care. For example, give your child a choice about where the IV should be placed.
3. Listen and take seriously your child's questions about their illness and medical care. Answer questions as clearly and honestly as you can. If you are unsure of the answer or how to best talk to your child about an issue, talk with your health care provider.
What you can do:
1. Help your child something they are good to encourage their interests.
2. Try to make your child more choices, and thus control over their medical care. For example, give your child a choice about where the IV should be placed.
3. Listen and take seriously your child's questions about their illness and medical care. Answer questions as clearly and honestly as you can. If you are unsure of the answer or how to best talk to your child about an issue, talk with your health care provider.
Adolescence
Many parents and
patients say the teens are the most difficult time for families. Families struggling
with the shift of responsibility and control over the illness, academic progress,
and social activities. If teens more responsible for their illness, the fulfillment
of a problem. Teens spend less time at home, more oriented toward their peers and
are motivated to be like their peers. All these factors can lead to non-compliant
behavior. Adolescents begin to think more like adults and adult concepts of disease
and death to understand. While teenagers can cognitively understand abstract concepts,
many feel protected from adverse effects that can lead to risk behaviors, including
experimenting with drugs and alcohol, sexual and aggressive behavior.
What you can do as a parent:
1. Continue to negotiate with your child responsibility for disease.
2. Let your teen start independent relationships with his or her health care, it can help you negotiate the transfer of care to your child and give him / her a private and safe place for any concerns.
3. Get information and support from other parents going through this difficult time.
4. Not hesitate to ask your family to meet with a psychosocial provider to help this year to manage.
What you can do as a parent:
1. Continue to negotiate with your child responsibility for disease.
2. Let your teen start independent relationships with his or her health care, it can help you negotiate the transfer of care to your child and give him / her a private and safe place for any concerns.
3. Get information and support from other parents going through this difficult time.
4. Not hesitate to ask your family to meet with a psychosocial provider to help this year to manage.
Maturity
The responsibilities of adult life can get even more complicated in the presence of a chronic disease. Adults face the challenge of maintaining relationships, work, medical insurance and the management of an often complex medical illness. For some, the attainment of maturity means a change in their system of medical care from a pediatric environment to an adult institution. Compliance with medical management remains a problem as patients balance the issues of the use of invasive medical procedures and the quality of life. Please read Proposal: Life as an adult in Pediatric World in our patient Forum Section
The responsibilities of adult life can get even more complicated in the presence of a chronic disease. Adults face the challenge of maintaining relationships, work, medical insurance and the management of an often complex medical illness. For some, the attainment of maturity means a change in their system of medical care from a pediatric environment to an adult institution. Compliance with medical management remains a problem as patients balance the issues of the use of invasive medical procedures and the quality of life. Please read Proposal: Life as an adult in Pediatric World in our patient Forum Section