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Children’s hemoglobinopathy and sickle cell program
Children’s hemoglobinopathy and sickle cell program is a nationally recognized program which treats the majority of children and teens in Minnesota with sickle cell disease or hemoglobinopathies. Because sickle cell disease affects so many major organs in the body, a multidisciplinary team including in-house pediatric specialists from every specialty work together to prevent and treat the effects of sickle cell disease.
Your child’s multidisciplinary care team includes evaluation and follow-up by a pediatric hematologist, nurse practitioner, nurse case manager, pediatric pulmonologist, social worker, genetic counselor, neuro-psychologist and adolescent gynecologist, as needed. A wide range of clinical services is provided, including:
- Access to clinical research
- Diagnosis. State-of-the-art imaging is available at Children’s to help diagnose conditions and define the best possible course for treatment. Transcranial Doppler technology is used to help identify and prevent strokes in children and teens with sickle cell disease.
- Infusion center for outpatient chemotherapy (LINK TO ho_P&S-infusion)
- Inpatient, emergency, and outpatient care
- Preventive therapies to maintain long-term health, including screening for acute complications.
Nationally recognized sickle cell pain management
The hemoglobinopathy and sickle cell program at Children’s is nationally recognized for its program to prevent and manage pain for children with sickle cell disease. Through the pain program, Children’s has reduced sickle cell disease hospital admissions for pain by approximately 50% and reduced lengths-of-inpatient-stays for sickle cell pain by nearly 50%.
Rigorous standards of emergency care
The acute illnesses or crises seen in children and teens with sickle cell disease are initially treated through Children’s emergency rooms in Minneapolis and St. Paul. Staff members use standards of sickle cell care recommended by the National Institutes of Health. These rigorous standards help your child or teen receive the fastest, most effective treatments for known manifestations of sickle cell disease, including fever, pain crises, priapism, and acute chest syndrome.
Family support services
Family support services for children and families coping with sickle cell disease include:
- Financial assistance. Children’s social workers and financial specialists can help families apply for government and other programs.
- Summer camp. Children’s annual sickle cell camp is held at Camp Courage in Maple Lake, about 45 miles west of Minneapolis. Campers meet others facing similar health challenges and are cared for by Children’s staff.
- Parent support group. A parent support group meets regularly.
For more information, visit the hematology/oncology services section.
Contact us
- If you are a family member with questions about Children’s hemoglobinopathy and sickle cell program or if you’d like to make an appointment, call Children’s – Minneapolis at (612) 813-5940 or Children’s – St. Paul at (651) 220-6732.
- If you are a health professional looking for a consultation or referral information, please call Children’s Physician Access at 1-866-755-2121 (toll-free).
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