HEALTH MAINTENANCE Your child will continue to be monitored by his or her primary care doctor for all routine care, including immuni- zations, checkups, and minor illnesses or injuries that are unrelated to thalassemia.
n HOW CAN I WORK WITH THE HEALTHCARE TEAM? The care of your child requires a team approach. You are a key player on your child’s healthcare team. You know your child better than anyone else, and your input is important. Other members of your child’s healthcare team include doctors, nurses, and social workers. Always speak openly with the other members of your child’s healthcare team. Ask questions whenever there are things you are not sure about. It may help to write down your questions as you think of them. This can help you remember all of your questions when meeting with the healthcare team.
Important questions you may want to ask include the following: • What type of thalassemia does my child have, and what does that mean? • What treatment choices are available? • What treatment do you recommend and why? • What are the risks or side effects during the treatment? • What are the risks and side effects following the treatment? • What is my child’s life expectancy?
n ARE MY FEELINGS NORMAL, AND WHAT CAN I DO ABOUT THEM?
Learning that your child has thalassemia is shocking and overwhelming. Many parents say, “I didn’t remember anything after the words ‘your child has thalassemia.’” Parents often feel numb and have a hard time believing the diagnosis. This is especially true when there is no family history of thalassemia. It is important to know that this is normal and expected. Thalassemia is complicated. Most families have difficulty processing all of the information the healthcare team is providing to them in the beginning. However, with time, the information will be absorbed. Many families feel they are responsible somehow for their child’s disease. Guilt is common with any genetic disease. Feelings of sadness, anger, and helplessness about your child’s diagnosis also are common. These feel- ings are normal. Each member of the family may express these emotions in different ways and at different times. Talking honestly with each other about these feelings, emotions, and reactions will help everyone in the family. Keep in mind there is no right or wrong way to feel. Family members need the chance to express their feelings in their own way when they are ready. Talking to friends, family, and healthcare team members can be difficult at times; however, expressing your feelings can help you cope. Your child will benefit from family and friends who show their care through communication and support.
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