n HOW CAN I HELP MY CHILD STAY WELL? Newborn screening has resulted in children being referred shortly after birth to centers where care is delivered using a team approach. Experienced hematologists, nurse practitioners (or physician assistants), nurses, nutritionists, social workers, and other members of the healthcare team address all aspects of care. Access is provided to the screening tests and other specialists who will be involved in your child’s care. These centers most often are located within the hospital where your child will be admitted, ensuring seamless care.
It is important for your child to see their hematology team on a regular basis, even if he or she is doing well. The team will provide the education you need to care for your child in the best way. Also, the ongoing screening and testing done at these well visits is needed for the prevention and early detection of long-term complications. Your child will continue to be monitored by their primary care doctor for all routine care that is unrelated to sickle cell disease. This includes immunizations, checkups, and treatment for minor illnesses or injuries. It is very important to keep up to date with immunizations because these will help your child avoid serious infections. In addition to the immunizations all children receive, your child also should receive the pneumococcal vaccine polyvalent (Pneumovax® 23) at ages 2 and 5. Your child also will receive the meningococcal vaccine. This will provide extra protection against the bacteria that threaten children with sickle cell disease who do not have well-functioning spleens. Your child also should have an annual flu shot. Avoiding situations that can lead to medical emergencies is very important. This means making sure your child rests as needed, stays well hydrated, and dresses properly for the weather. Teach your child good hand-washing and hygiene techniques to avoid the spread of infection. Simple Dos and Don’ts • Always keep your child dressed warmly during cold weather. • Keep your child out of extreme heat to avoid dehydration. • Ensure your child drinks plenty of fluids. Always encourage kids to have a water bottle with them. • Do not let your child sit around in a wet bathing suit. Dry them off immediately after getting out of the pool or at the beach. • Make sure your child gets adequate sleep. • Keep medications (Advil, Motrin, or other pain medications) readily available.
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