Children with sickle cell disease need regular visits with their hematologist. The sickle cell clinic team provides disease-specific healthcare and education for the child and their family. This includes topics key to the child’s health, such as hydroxyurea, vaccinations, fever and pain management, stroke prevention, growth and development, and help with school issues. During these visits, self-management topics such as the importance of taking medications as prescribed, avoiding temperature extremes (very cold and very hot weather), getting enough rest and hydration, keeping warm in cold weather or when swimming and tips for eating habits are discussed.
Pain episodes can vary in severity, how often they occur and how long they last. Children often have pain in the arms, legs, chest and back. Individualized pain management plans can help parents manage pain at home. However, sometimes hospitalization is required.
A blood transfusion can help lower the risk for sickle cell-related complications during illness, surgeries, tests and procedures. Some children receive monthly blood transfusions because of other severe complications of sickle cell disease, such as stroke, acute chest syndrome, and/or pain episodes.