Sickle Cell Disease
The care of patients with sickle cell disease is coordinated between the pediatrician and the pediatric hematologist. Care emphasizes prevention but requires constant monitoring and care of complications resulting from the abnormal hemoglobin:
- Routine visits at pediatrician and hematologists
- Penicillin Prophylaxis - prevents pneumococcal bacterial infection, usually stopped at age five years
- Vaccination (In addition to routine vaccines at the pediatrician we recommend 23-valent pneumococcal polysaccharide vaccine (pneumovax) as well as a yearly flu shot)
- TCD (Transcranial Doppler ultrasonography) - stroke screening for patients at high risk
Initial diagnosis is made by obtaining fluid from inside the bone marrow (bone marrow aspiration) This procedure is performed when the child is sedated. Special tests on this fluid tell the type of leukemia. The spinal fluid is also tested to see if there are leukemia cells in the fluid that surrounds the brain. After diagnosis a vascular access device (way to give chemotherapy into the veins) will be inserted by the pediatric surgeons or interventional radiologists. Depending on the type of leukemia and other factors the length of the initial inpatient stay may vary. With acute lymphoblastic leukemia (ALL) the majority of the chemotherapy is administered as an outpatient. In acute myelogenous leukemia (AML) the majority of the chemotherapy is given as an inpatient.
Before the first visit, we review all prior medical records which will allow us to create a summary of treatment from the day of diagnosis to the present. This information helps us determine the risk of long-term side effects, and develop personalized guidelines to help each patient maintain the best possible health. On the first visit patients meet with a pediatric oncologist for a complete physical exam and any required testing. At that time we will review any potential long-term effects from the cancer or treatment. Above all, we will spend as much time as needed to answer questions and help our patients develop a lifetime plan for wellness.