Cardiomyopathy can be a complex disease when diagnosed in children. It is important to have a good medical team in place to manage your child’s care. Your child’s team may include practitioners from a wide spectrum of medical disciplines to provide comprehensive cardiac care. Your child’s team may include a pediatric cardiologist, heart surgeon, pediatric cardiac nurse, and specialists in genetics, psychiatry, child life, social work, neurology, immunology, endocrinology, nutrition and infectious diseases.
In order to monitor your child’s heart condition, periodic check-ups and testing with a pediatric cardiologist are important and necessary. This is in addition to your child’s annual well visits with his/her pediatrician. The frequency of visits with a pediatric cardiologist may vary from every one to three months to once or twice a year depending on the disease severity. Testing may include blood tests, EKG, echocardiogram, Holter test, and chest X-ray.
Parents play an important role in their child’s medical management, and you can influence the quality of care your child receives. Being proactive and well informed can ensure that your child receives the best medical care possible. In some cases, it may be necessary to seek the advice of additional physicians, especially if your child’s heart condition deteriorates or you have a family history of the disease. Also, if you are not comfortable with your child's care, do not be afraid to seek the advice of another pediatric cardiologist or pediatric specialist.
Advance planning, knowledge of the disease and open communication with those who care for your child are factors that contribute to his/her medical well-being. To help you manage your child's special healthcare needs, you can develop a care notebook for your child. Useful forms can be obtained through the Center for Children with Special Needs and the American Academy of Pediatrics' National Center for Medical Home Implementation.
It is a good idea to communicate often with your child’s doctors and specialists, even your child’s school nurse and teachers. Also, your child’s pediatrician should be informed of any treatment changes. Make sure everyone has the information they need so that your child gets the medical attention he/she deserves in every situation.