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12 Tips For Parents of Children with Sickle Cell Disease

  1. Start preventive care as soon as diagnosed – before symptoms appear

  2. Identify a medical home with a qualified, patient-centered sickle cell center

  3. Begin penicillin at 2 months until at least age 5 (sometimes longer or even lifelong)

  4. Between age 2 and 3, get an annual transcranial Doppler test to determine stroke risk, continue until age 16; consider MRI beginning at age 5

  5. Take fever, pain and other symptoms seriously and seek medical attention

  6. Learn how to check your child’s spleen for enlargement, and check it regularly

  7. Hydrate, hydrate, hydrate

  8. Make sure your child gets sufficient nutrition

  9. Stay up-to-date on immunizations

  10. Make sure your child takes all medications as prescribed

  11. Avoid extremes of temperature (e.g., dress warmly on cold days)

  12. Work closely with your child’s school to ensure proper medical attention and learning environment
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12 Tips Parents of Kids with Sickle Cell Should Know