n IS MY CHILD’S DIET IMPORTANT? Your child should eat a well-balanced diet that has the number of healthy calories advised for their age. He or she also should take a daily folic acid supplement, if prescribed. During each visit to your hematology team, your child will be weighed and measured. Your child will need the support of a nutritionist if he or she is not growing or gaining weight. It is important to maintain a healthy weight because obesity can lead to stress on the joints and heart as well as conditions such as hypertension and diabetes. Drinking fluids, especially water, is very important for your child because dehydration can lead to sickling of red blood cells. This is especially true during stressful times, such as pain crisis, illness, or being in hot weather. Caffeinated and sugary beverages should be avoided. Eating a well-balanced diet, including fruits and vegetables, and drinking plenty of water are important to avoid constipation, which can cause abdominal pain. Talk to your hematology team or primary provider if your child has constipation or abdominal pain. n ARE MY FEELINGS NORMAL? Feelings of guilt, fear, worry, and helplessness, among others, are common when you have a child living with sickle cell disease. Even though sickle cell disease is a serious condition, you should know there are many steps you can take to help improve your child’s quality of life. It helps to develop strong relationships with healthcare providers who can answer questions and provide treatment for your child. Your hematology team may be able to introduce you to other parents and children affected by sickle cell disease so you can share information, offer support, and give practical advice to one another. Sometimes parents are anxious about what might happen to their child because they do not have sufficient or accurate information about sickle cell disease. Many parents find it helpful to learn as much as they can about sickle cell disease. Learning how to help prevent pain and to palpate (feel) the spleen are important to keep your child healthy. You should take your child for regularly scheduled checkups with a hematology provider. You can work with your child’s hematologist and sickle cell disease team to learn more about what you can do to help your child stay healthy. This way, you also will be able to help your child receive care quickly if problems develop. Having a child with a chronic illness can trigger many emotions. Because sickle cell disease is inherited, some parents feel guilty about having “given” the disease to their child. Some parents find support in their church or other faith community as well as from their child’s school counselor, social worker, and nurse. You might want to attend support groups with other parents of children with sickle cell disease. Don’t be shy about asking questions or seeking help for yourself and your child. You are an important role model for your child. When your child sees how you get information and guidance for making decisions about keeping him or her healthy, your child learns good self-care habits. Seeing you take good care of your own health and enjoy your life helps to motivate your child to follow in your footsteps.
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