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Sickle cell disease program
As the largest comprehensive pediatric sickle cell disease program in the state, Children’s Wisconsin offers care for the whole child, from physical health to social and emotional wellbeing. Our expert medical providers, nurses, social workers, psychology and neuropsychology team, research scientists, and an array of other specialists are committed to helping our more than 300 patients and their families navigate life with sickle cell disease.
We are also on the cutting edge of research for sickle cell disease. Our program was among the first in the world to treat children with sickle cell disease using hydroxyurea, a medication that helps reduce hospitalizations, pain events, and the need for blood transfusions. Researchers in our program are currently leading the way to a better understanding of what causes pain in individuals with sickle cell disease with the goal of developing better treatments for pain. Our scientists have developed tools to assess how sickle cell disease impacts the well-being of children and their families. Children’s Wisconsin is one of only 10 clinical research sites for the ASH Research Collaborative Sickle Cell Disease Clinical Trials Network, giving our patients access to the latest therapies. Research in the sickle cell disease program is funded by the National Institutes of Health, Centers for Disease Control and Prevention, the Midwest Athletes Against Childhood Cancer (MACC Fund), and other local and national foundations.
Our care team
Located in the MACC Fund Center for Cancer and Blood Disorders at Children’s Wisconsin, our sickle cell program is staffed by a multidisciplinary team of dedicated disease specialists. Our care team includes:
- Pediatric hematologists - Our board-certified physicians, Amanda Brandow, DO, MS and Allison Remiker, MD, specialize in the study and treatment of sickle cell disease.
- Nurses - Our program has a dedicated pediatric nurse practitioner, Hillary McCown, APNP, who sees patients in our clinic and day hospital, as well as a nurse coordinator, Nidra Moore, who manages and coordinates care for children with sickle cell disease.
- Neuropsychometrist – Sickle cell disease can cause neurocognitive complications, which can disrupt the brain’s ability to think and reason. These complications can make school a struggle for children with sickle cell disease. Our neuropsychometrist, Meghan Miller, LPC, specializes in the connection between the brain and behavior. She provides learning and memory testing and works with schools on patients’ individualized education programs (IEP). Developmental screening is also available for younger children.
- Psychologist - Our chronic disease-based psychologist, Jeffrey Karst, PhD, provides inpatient and outpatient support for our children with sickle cell disease and their families. These services include behavior management for young children, psychological screening for older children, ongoing counseling for patients and families, and support for nonpharmacological pain management.
- Social worker - Our program includes a dedicated social worker, Latoya Stamper, MSW, who helps our families access the resources and support they need.
- Genetic counselor - Sickle cell disease is caused by a genetic mutation inherited from both parents. Our genetic counselor, LuAnn Weik, MS, helps families understand how the condition occurs, the implications for other family members, and, when appropriate, what sickle cell disease means for patients’ eventual family planning.
- Researchers - Our physician researchers conduct clinical research studies, laboratory studies and investigator-initiated trials to learn more about sickle cell disease and its treatments.
A Children’s Wisconsin hematologist is on call 24 hours a day for children with sickle cell who need urgent medical attention. Children with sickle cell disease who have acute care needs and complications are treated in our Emergency Department. Our program has strong collaborations with providers in the emergency department to ensure children with sickle cell disease receive the best and safest care.
Diagnosis and treatment
Sickle cell disease is a group of chronic blood disorders that affect hemoglobin, the protein in red blood cells that carries oxygen throughout the body. These disorders cause the normally disc-shaped hemoglobin to become misshapen, stiff, and sticky, making it less effective at transporting oxygen and more likely to cluster and form blockages. Sickle cell disease can cause several complications, such as chronic anemia, acute and chronic pain, and complications in other organs including the lungs, brain, kidney, spleen, heart and eyes. Sickle cell disease requires lifelong comprehensive care.
At Children’s Wisconsin, our sickle cell disease program begins at diagnosis. Most of our patients receive their diagnoses shortly after birth, usually through the Wisconsin Newborn Screening Program. At a patient’s first visit, typically by two months of age, the child and family meet with our care team to begin a treatment plan and learn about the complications of sickle cell disease. Sickle cell disease complications often occur suddenly and without warning, so our strong focus on education helps parents and guardians prepare and know when and how to seek care when needed.
Follow-up visits are scheduled at ages six months and one year. After that, we see our children with sickle cell disease annually for a comprehensive evaluation. These clinic visits include meetings with the care team, in-clinic laboratory testing, medication refills, radiological studies, and certain immunizations. Children receiving medications, such as hydroxyurea, are seen every 2-3months in our outpatient clinic. Children who receive chronic red blood cell transfusions or other therapies, are seen more frequently (e.g. monthly) in our Northwestern Mutual day hospital.
Our sickle cell disease team also works closely with other specialists and departments within Children’s Wisconsin to meet the varied needs of our patients. For instance, because children with sickle cell disease can experience recurrent pain, we frequently collaborate with the Jane B. Pettit Pain and Headache Center.
Children’s Wisconsin manages the care of children with sickle cell disease until age 19. Then, we refer local patients to Froedtert Hospital’s Sickle Cell Disease Clinic for continued care as an adult. Our sickle cell team works with the Froedtert’s Sickle Cell Disease Transition Program to ensure optimal care transition.
Contact the Children’s Wisconsin sickle cell disease program at (414) 266-2420 for appointments or more information.
Need more information or an appointment? We’re happy to help.
For appointments, contact the individual programs within our MACC Fund Center for Cancer and Blood Disorders.