n HOW CAN I HELP MY CHILD? Children often think that something they did caused their thalassemia. Reinforce that this is not the case. Make sure your child understands that your feelings of anger and sadness are directed at the thalassemia and not at him or her. This will help to keep your relationship honest and maintain closeness. Your child will need to share his or her feelings with someone that he or she trusts. Sometimes, children choose to share feelings with some- one other than a parent because they are afraid they might upset their parent. Don’t be afraid to ask your child about his or her feelings. It may be what your child wants. Also, don’t be afraid to share information about what is happening, and why, with your child. The things children imagine on their own are sometimes more frighten- ing than what is actually happening.
In spite of your child’s condition, keep in mind that he or she is still a child. All children need love, attention, and the opportunity to learn and try new skills. Keep in mind that he or she still has all the needs of a growing child. Do not avoid talking to your child about thalassemia and its treatment, but use words your child will understand. Children tolerate treatment better if they understand it and are allowed to help make decisions about their care when appropriate. As a parent, it is difficult to watch your child undergo medical pro- cedures and treatment. Your feelings about what your child is going through must be balanced with the knowledge that treatment allows your child to live a full and meaningful life.
n IS MY CHILD’S DIET IMPORTANT DURING THERAPY? Yes. Your child should eat a well-balanced diet that has the number of healthy calories advised for his or her age; this sometimes includes a daily folic acid supplement, if prescribed. At each visit with your hematology team, your child will be weighed and measured. Your child will need nutritional support if he or she is not growing or gaining weight. It is also important to maintain a healthy weight because obesity can add stress to the joints and heart and lead to conditions such as high blood pressure and diabetes. A dietician is also a part of your child’s healthcare team. He or she is trained in the caloric and nutritional needs of children. The dietician can provide you with education regarding your child’s dietary needs as well as ideas about how you can meet these needs during treatment. When there is a concern about nutritional problems, your child’s healthcare team will get involved. Because of the risk of iron overload, you may be advised to limit the amount of iron-rich foods your child eats. Multivitamins, herbs, and certain over-the-counter drugs should be avoided unless approved by your child’s healthcare team, because many include extra iron. Please ask your healthcare provider if you are considering any of these types of therapy.
n CAN MY CHILD ATTEND SCHOOL? School is an important part of every child’s life. In addition to learning about reading, writing, and math, children also learn how to get along with others. Living life in ways that are similar to their siblings and peers also gives
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