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Story of an Alpha Thalassemia Baby


Living with Thalassemia

Living with Thalassemia
▶ Life Stages:
  1. Infancy
  2. Toddler
  3. School Years
  4. Adolescence
  5. Adulthood
Transition
▶ Nutrition
▶ Immunization
▶ Fertility and Pregnancy
▶ Pregnancy and Motherhood
▶ Patient Stories
▶ Resources and Support:

Life Stages: School Years

school years Children during these years look for activities they are good at, math, reading, sports, art, helping around the house, etc. This need for a sense of mastery also extends to a child’s illness. Children will want to have more control over procedures and ask many more questions about why procedures and tests are being conducted. School age children being to look more towards their peers to assess their competence in academic and social arenas. Children will begin to take notice more that their peers do not come to the hospital like they do and will ask questions about this. As children get older, their cognitive development changes and they have a different understanding of themselves and their environment. You may get asked the same questions many times.

What you can do:

  1. Help your child find something that they are good at, encourage their interests.
  2. Try to give your child more choices, and therefore control, about 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. When you are unsure of the answer or how to best talk with your child about a concern, talk to your health care provider.

Northern California Comprehensive Thalassemia Center
UCSF Benioff Children's Hospital Oakland
747 52nd Street, Oakland CA 94609   •   Phone: (510) 428-3347   •   Fax: (510) 450-5647
© 2003-2012 Children's Hospital & Research Center Oakland
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