Treatment for sickle cell disease

Our team of care specialists is here to partner with you and your child to help meet their medical needs while improving the quality of their life. This means finding ways to manage their pain, help prevent organ damage and minimize their risk of having a stroke.

We’ll also help protect your child from getting infections, which can become very serious in children with sickle cell disease.

In addition, we recognize the importance of teamwork. That’s why we’re part of the Chicagoland Children’s Health Alliance, partnering with Pediatrics at NorthShore University HealthSystem and the University of Chicago Medicine Comer Children’s Hospital in pediatric hematology. Through us, your child has access to even more specialists and programs.

Treatment options

You want your child to feel better, and we do too. We’ll work with you to develop an individual treatment plan for your child to minimize their pain and keep their red cell counts healthy.

Recommended treatments may include:

• Blood transfusions: We provide blood transfusions and apheresis therapy in the Keyser Family Cancer Center.
• Education: A school coordinator can help your child keep up with schoolwork and receive school support and services.
• Managed care: We help your child with medication management, nutritional support and preventive care.
• Medical tests: Your child’s doctor may order a variety of lab and medical tests to determine the function of organs such as the heart or lungs.
• Medications: Prescriptions may include:
  • Penicillin
  • Folic acid
  • Hydroxyurea to decrease the number of sickle cells while stimulating the production of healthy red blood cells
• Pain management: We’ll work closely with our pain team to promote appropriate pain control and work toward an individualized treatment plan for your child.
• Red blood cell apheresis: This special transfusion filters out a percentage of the sickle red blood cells and replaces them with normal, healthy red blood cells. This therapy may be given to:
  • Children who have had a stroke
  • Children who are at a high risk of having a stroke
  • Children who have developed other serious complications
• Team approach to care: Our multidisciplinary care team includes a dedicated nurse coordinator as well as a social worker to help your entire family learn to cope with sickle cell disease.
• Vaccinations: Common illnesses can become serious for children and adults who have sickle cell disease. So it’s especially important to protect your child by making sure they get all the vaccinations that their doctor recommends.

Common lab tests

Your child may need to have lab tests as part of their treatment plan to evaluate the effectiveness of treatment. These tests include:

• Complete blood count (CBC): This blood test can tell you the number, shape and size of your child’s red blood cells and the hemoglobin level.
• Ferritin: If your child undergoes repeated blood transfusions, iron can build up in the body and iron deposits in many main organs can cause damage. This test determines whether there’s enough iron in the body to make new red blood cells.
• Kidney and liver function tests: These blood tests show if the kidneys or liver have been damaged by sickle cell anemia.
• Reticulocyte count: The number of these cells shows whether your child’s bone marrow is doing its job well, making and releasing young red blood cells into the bloodstream.
• Urine test (urinalysis): This determines if your child has a bacterial infection in the urine or if there are red blood cells in the urine, which can be caused by slight bleeding in the kidneys.

Common medical tests

In addition to lab tests, your child might also undergo medical tests to make sure everything’s functioning as it should. These tests include:

• Cardiac echocardiography (Echo): Determines if your child’s heart is working well.
• Computed tomography (CT) scan: Makes a three-dimensional picture of the inside of your child’s body.
• MRI (Magnetic resonance imaging): Produces detailed images of your child’s organs and bones.
• Pulse oximetry: Measures the oxygen going through their blood by placing a plastic band place around your child’s index finger.
• Transcranial doppler ultrasound: Bouncing sound waves off parts of your child’s body are used to evaluate your child's risk of developing stroke.
• X-ray: Taking a picture of parts inside your child’s body, which can show if there is avascular necrosis of a bone or if an infection or fluid is in the lungs.

Ongoing care

After the initial treatment, we’ll continue working with your child providing long-term care as they manage sickle cell disease. This ongoing care will include:

• Routine physical exams
• Diagnostic testing
• Regular monitoring of symptoms.