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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: Toddlerhood

toddler

Children at this age are testing their environment for what they can do and testing their parents for what they are allowed to do. Children are not able to fully understand why they need to come to the hospital and why things that are uncomfortable are being done to them (needle sticks, exams). You may find increased resistance to invasive procedures such as blood draws or transfusions. If your child is on chronic transfusions, you may begin using Desferal at home during this time. It can be very difficult to stick your own child, both physically and emotionally. If your child attends day care, you will need to think about what types of information you feel comfortable sharing about your child’s disease.

What you can do:

  1. Medical play can assist your child to master medical procedures. Have a child life specialist or psychosocial provider at your hospital work with your child around medical play. It can also be helpful to have a toy medical bag at home.
  2. During procedures or IV’s, help your child manage the stress by distracting them with books, songs or toys.
  3. Speak with your health care providers about what you should share with day care centers, baby sitters, etc.
  4. Continue to expect age appropriate behavior from your child and don’t be afraid to set limits.

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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