Sickle Cell Treatment Centers

There are several Sickle Cell Treatment Centers located throughout the state of New Jersey for care of children, teenagers and young adults with sickle cell disease and other hemoglobinopathies. A list of centers is included at the end of this section.

Every member of the center's health care team plays a role in helping you and your child. Each center is headed by a pediatric hematologist, a doctor that specializes in blood disorders of children. Other doctors, nurses, and social workers are also on staff to assist in treating these children and in helping families manage their care. The staff of the center will help you understand the information in this guide. They will also show you how to take a temperature and how to feel the spleen. They will examine your child during center visits. The social worker will help you deal with your concerns and issues about school and work. The staff can also arrange for you and your child or other family members to also be seen by other health professionals including: geneticist or genetic counselor, psychologist, and nutritionist. See list of genetic centers at the end of this section.

Emergencies Or Problems

When your child has an emergency or problem, call the Sickle Cell Treatment Center or take your child to the nearest hospital emergency room.

Appointments

Children with sickle cell disease are seen frequently in the first year of life. After that first year, children are usually seen two to four times each year. More frequent appointments may be necessary if your child has experienced major problems related to having sickle cell disease.

These visits are very important to help keep your child well. If you cannot make an appointment, please let the staff know as soon as possible so the appointment can be rescheduled.

Routine Visits

Routine visits to a center are set up so the staff can do the following:

• Recognize problems early when they can be more easily treated;
  
• Make sure that proper medicines are being given in proper doses;
  
• Be sure that the proper immunizations have been given to help prevent infection (in addition to the normal baby shots, other specific immunizations are given to children with sickle cell disease to help prevent infections).
  
• Answer your questions and continue to teach you more about the disease.

Medicines

Children with sickle cell disease should take Penicillin by mouth twice a day unless they are allergic to penicillin. In that case, a different antibiotic will be given. This is to help protect your child against life-threatening infection.

Children with sickle cell disease should also take Folic Acid, 1 mg, each day. This vitamin is needed to help your body make hemoglobin. Since your child makes hemoglobin more rapidly than normal, he or she will use up this vitamin faster than normal and so your child requires more than the usual amount of this vitamin.

Try to let the center staff know before you run out of medicine or vitamins.