Sickle Cell Outpatient Program

The Sickle Cell program at JJCCC provides tertiary level specialty care for infants,  children and adolescents with sickle cell disease and other related blood disorders. Sickle cell disease is an inherited blood disorder that affects red blood cells. The shape of the red blood cells become sickle-shaped (or crescent shaped), making it difficult for the cells to pass through small blood vessels. This blocks blood flow and causes damage to organs, chronic pain and other complications.

Condition Management

The sickle cell care team offers multi-specialty medical care, including assessment, consultation, treatment and preventative care. Psychosocial programs such as family support, education, community support and school reintegration are integrated into the condition management of the child. The hematologist/oncologist acts as a consult for any patient that is hospitalized with Sickle Cell or for those patients who need hospitalization for a type of transfusion or other treatment needs.

In addition to treating children with sickle cell disease, JJCCC also is heavily involved in research to help find cures and discover new treatments for sickle cell disease.

Treatment & Preventative Measures

Blood transfusions are the most common type of treatment for children with sickle cell and act as a preventative measure against childhood stroke. Many patients in the Sickle Cell Center may be screened or are seen in the Stroke Clinic. Some children may need transfusions every few months, or once a year, while others may need chronic blood transfusions every three to four weeks. The transfusions can reduce the risk of recurrent acute chest syndrome, the number of painful episodes—excruciating pain in the back, extremities, abdomen or chest—and other complications. There are two main types of blood transfusions for sickle cell patients:

• Simple transfusion –a procedure that puts packed red blood cells into the child’s body through units of blood, that is given through a small tube (drip) placed in a vein through the arm.
• Exchange blood transfusion – a procedure that is used to alter the hemoglobin level rapidly and to replace sickle cells with normal cells. This is the preferred method of transfusion for those on chronic transfusions to avoid iron accumulation.

Blood transfusions are typically done in the Infusion Center at Miller Children’s.

In addition, the sickle cell patients get screened and tested regularly to ensure that their physical and cognitive needs are being met throughout treatment:

• Transcranial Doppler ultrasounds are given for stroke prevention
• Abdominal ultrasounds are given to check for gallstones
• Imaging of the bones is used to evaluate avascular necrosis
• Imaging of the brain is used for detection of silent infarcts
• Imaging techniques are also used to identify chronic organ damage
• Neuropsychological screening is available to help identify problems, which if not adequately addressed, can affect a child's ability to learn

Children are usually seen at the Sickle Cell CSS Center once every 6 months to ensure treatment and condition management is on track.

Approved CCS Center

The Sickle Cell Center at JJCCC is a California Children’s Services (CCS) approved Special Care Center (SCC). This means a specially designated multidisciplinary care team is responsible for all care coordination and case management of a patient in this program. Patients typically qualify for the Sickle Cell CCS Special Care Center by medical diagnosis, complexity of their disease and financial status.

Visit the Sickle Cell CCS Center.