Parent and Caregiver Handbook for Sickle Cell
Appendix: Types of medical providers
Below is a list of types of medical providers that people with sickle cell disease may need to work with.
The person who tests your child’s hearing if any problems come up.
Cardiologist (heart specialist)
The doctor who does EKG, echocardigrams (ECHO), and checks your child’s heart.
Child life Specialist
A person who uses play with your child to lower anxiety and promote understanding and healthy patterns of development during hospital stays. The child life specialist supervises programs for groups of children in the playroom and for the individual child at bedside.
Clinical Research Coordinator
A person who manages and conducts the day-to-day activities of a clinical trial. They are the person to talk to about that clinical trial.
The doctor who helps your child keep his teeth healthy and clean.
Emergency Room Doctor
This doctor specializes in emergency care and is often the specialist who first sees a sickle cell patient in the emergency room.
Family Practice Physician
A doctor who provides medical care for people of all ages, from babies to older adults. A family practice physician can give your child routine health care, referring to other specialists as needed.
The doctor who specializes in problems of the liver, stomach, and intestines. This doctor may perform liver biopsies (or this procedure may be performed by another specialist).
A person who explains how your child inherited sickle cell disease and your chances of passing it on to future children. They also can tell you if there are any other hereditary disorders that might be in your family. The genetic counselor teaches you and your child about the disease and how to deal with it.
Hematologist (blood specialist)
The doctor who treats your child’s sickle cell disease and other blood diseases. Usually pediatric hematologists are also oncologists (treat children with cancer) and are called Pediatric Hematologist Oncologists. A hematology fellow is a doctor who has finished their specialized training in pediatrics and is now in a training program to become a board-certified hematologist specialist.
A hospitalist is a doctor whose specialty is managing patients in the hospital. In many programs they become the primary inpatient doctor who works with the sickle cell team.
Nephrologist (kidney specialist)
The doctor who treats your child’s kidneys if they are damaged.
The doctor who is an expert in the nervous system. The nervous system includes the brain. This specialist checks for seizures, strokes, or related problems.
This is a psychologist who helps evaluate and treat children with learning problems.
A nurse who has special training that may see your child instead of a doctor at routine medical visits. Nurse practitioners work under the supervision of pediatricians and other medical. A nurse practitioner can coordinate care between your pediatrician and hematologist and make sure that things go smoothly if your child is in the hospital.
The person who gives you advice on the best foods for your child and helps you find ways to get your child to eat what is good for him.
The person who takes your child to “O.T.” (Occupational Therapy) when he is in the hospital. These therapists help your child do activities that are useful as well as interesting. These activities can include dressing, cooking, sewing, computer games, etc. These activities can help your child focus on other things besides being sick or in pain.
Ophthalmologist (eye specialist)
The doctor who checks your child’s eyes for any sickle cell damage. This doctor can use surgery or laser therapy to correct problems in and around the eye.
Orthopedist (bone specialist)
The doctor who treats damaged bones or joints.
A doctor who provides medical care for infants, children, and teens. A pediatrician can give your child routine care, referring your child to other specialists as needed.
A doctor who is a specialist in the function of the bones, muscles, and nervous system. A physiatrist can help people with special exercises to relieve pain and increase activity.
The person who takes your child to “P.T.” (Physical Therapy) when he is in the hospital. These therapists also bring hot packs to the clinic if your child is being treated for pain or provide activities designed to help relieve pain, such as mild exercise or whirlpool (hot tub) treatments.
Primary Care Physician
A pediatrician or family practice physician who provides routine medical care for infants, children, and teens. A primary care physician can give your child routine health care, referring to other specialists as needed.
A doctor who has special training to help people deal with stress and can prescribe medications to help relieve stress.
A person who provides counseling for families and children. Psychologists are trained to help children and families deal with a chronic illness, including stress and pain. They also help with other concerns, such as school problems, behavior problems, and depression.
A pulmonologist is a doctor who specializes in breathing and lung problems and supervises the pulmonary function test. People with sickle cell disease may have undetected asthma and lung injury which the pulmonologist can correct.
Is a doctor who is undergoing specialized training in a hospital.
The person who helps children and families cope better with sickle cell disease. A social worker can help you with billing and health insurance, getting medical care in and out of the hospital, and finding support for your emotional needs. You and your child can also talk to a social worker about any of your problems or feelings.
A surgeon is a doctor who is trained to do surgery. General surgeons consult and when needed, operate on people with sickle cell disease who have gall bladder or spleen problems. An orthopedic surgeon specializes in diagnosing and treating bone and joint problems. A neurosurgeon evaluates patients who have had a stroke.
This list is provided courtesy of the University of San Francisco, Benioff Children’s Hospital Oakland Sickle Cell Center.