PENICILLIN (FOR PATIENTS TREATED WITH SPLENECTOMY) Infection is a serious medical emergency for children who have had a splenectomy. Children who undergo a sple- nectomy are treated with penicillin to prevent infection. Your child’s healthcare provider will determine how long penicillin is needed following the splenectomy. Fever is a sign of infection and should be addressed immediately by calling your child’s healthcare provider and going to the nearest emergency room.
FOLIC ACID Folic acid is a vitamin needed by the body to make blood. Your child’s health- care provider may prescribe folic acid daily. IMMUNIZATIONS Your child should receive all routine childhood vaccinations, including the 23-valent pneumococcal vaccine (Pneumovax ® ) and the meningococcal vaccine (Menactra ® ), in the event of a splenectomy. It is recommended that all thalassemia patients receive the hepatitis A vaccine as well as an annual influenza (flu) vaccine.
BONE MARROW TRANSPLANT At this time, bone marrow transplant is the only cure for thalassemia. Bone mar-
row transplant is, for the most part, only available to people who have a tissue-matched donor. Most often this donor is a sibling who does not have thalassemia. Before a bone marrow transplant, your child will be given chemotherapy and, possibly, radiation to destroy his or her own bone marrow. Then, he or she will receive an infusion of the donor’s bone marrow or stem cells. In the weeks to months following the transplant, the donor cells should take over and produce blood cells that are unaffected by thalassemia. Transplant has risks that may include serious infection, bleeding, and organ damage from the chemotherapy and radiation. Graft-versus-host disease, in which the donor’s new marrow begins to attack the patient’s body cells, may also develop. Finally, the bone marrow may not replace the patient’s marrow. This is called graft failure.
n HOW CAN I HELP MY CHILD STAY WELL?
COMPREHENSIVE CARE Newborn screenings are blood tests done on babies in the days after birth that look for a number of inherited diseases. Newborn screening enables children to be referred shortly after birth to centers where care is delivered by a team approach. This team includes experienced hematologists, nurse practitioners, physician assistants, nurses, nutritionists, and social workers who will address all aspects of care. It is important for your child to see his or her healthcare team on a regular basis, even if he or she is doing well. The healthcare team will provide the education you need to care for your child in the best way. Also, routine screening and testing done during these visits is needed for the prevention and early detection of long-term chronic complications. Organ damage from iron overload is of great concern to the healthcare team. It is important to ensure that your child takes his or her chelator exactly as prescribed by the healthcare provider.
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