Cardiomyopathy in children is rare, and it is important to have a good medical team in place to manage the care of a diagnosed child. A comprehensive care approach is best, which draws upon the combined knowledge and expertise of practitioners from different medical disciplines. Your child’s care 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.

Routine Care

Parents and caregivers play an important role in managing their child’s medical care. Being proactive and knowledgeable about cardiomyopathy will ensure that a child receives the best medical care possible.

To monitor your child’s heart condition, it is recommended to have periodic check-ups and testing. Visit frequency will vary depending on your child’s disease severity. Testing may include blood tests, an EKG, echocardiogram, Holter test, and a chest X-ray. Follow-up visits are necessary to monitor heart function, treatment effectiveness, and new complications. During the examination, the cardiologist will evaluate for abnormal heart rhythm and sudden cardiac arrest as well as a predisposition to progressive heart failure.

Working with the Medical Team

Building a strong working relationship with your child’s medical team is an important part of your child’s care. Understanding your child’s diagnosis and being prepared for his/her medical appointments will allow you to have a more meaningful discussion with your child’s physician. The American College of Cardiology has practical information on Preparing for your Health Visit. Additional tips for making the most of your child’s medical visit include:

  • Become more knowledgeable about your child's condition using credible sources to research pediatric cardiomyopathy, and keep in mind that not all information will be applicable to your child’s situation.
  • Prepare a list of questions and make a note of any new information that you want to provide the doctor. You may have questions about evaluation, treatment, screening, and lifestyle adjustments. For a list of questions to ask your child’s cardiologist, click here.
  • If there is a part of your child's treatment that concerns you, is unclear or confusing, discuss the issue with your child’s doctor to resolve.
  • Don’t be afraid to speak up if you feel you are not getting the attention or quality of care that your child needs. The best approach is to be firm and straightforward while remaining calm and pleasant in your request.
  • If seeing a new doctor, send your child’s medical file prior to your appointment. You should include information about your child's medications and a contact list of doctors who have evaluated your child.

To help manage your child's healthcare needs, you can build 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 Resource Center for Patient/Family-Centered Medical Home.

Managing Illnesses

Children with heart disease may have a weak immune system making them more susceptible to infections and getting sick. A child with mild cardiomyopathy usually will recover from a common cold without any issue, but a child with severe cardiomyopathy will need to be carefully monitored for high temperature (flu, pneumonia) or highly contagious (respiratory-syncytial virus) diseases to prevent additional strain from being placed on the heart. Practical tips for preventing illnesses include:

  • Continue with routine immunizations at recommended ages
  • Consider an influenza or pneumococcal vaccine annually
  • Avoid people who are ill or crowds during the flu season
  • Wash hands frequently with anti-bacterial soap

When over-the-counter medicine is needed, it is best to check with the cardiologist about whether they are safe to take with your child’s heart medication. Certain cold and flu medicines with pseudoephedrine should be avoided because they can cause an irregular or faster heartbeat.

Knowing your child's normal temperature, as well as heart and respiratory rates when asleep and awake, can help you determine how sick your child is. As a general rule, a physician should be contacted immediately if your child experiences difficulty in breathing, severe coughing, loss of appetite, and ongoing listlessness.