The teen years can present some of the most difficult challenges for family. Not only are there physical changes, but there are behavioral changes. Your teen may start to exert his/her independence, experiment with different looks and identities and resist parental authority. For a teen with a chronic illness like cardiomyopathy, there may additional psychosocial issues to deal with. They may feel angry or alone about having a chronic heart disease. At the same time, they are dealing with issues of self-identity, peer acceptance, sexual behavior, drinking and drugs. Medical compliance or following a treatment regimen may become more of an issue during this time.

Parents can help their teenager become more responsible and independent by guiding them in making the correct lifestyle choices.

  • Refrain from smoking or taking stimulants.
  • Eat healthy well balanced meals with adequate calories and protein.
  • Avoid physical overexertion.
  • Get plenty of sleep.
  • Continue with regular medical evaluations and dental care.
  • Take prescribed heart medication.

As your teen approaches adulthood, there will be new health care issues to consider. Transitional health-related issues that you and your teen may want to discuss with his/her cardiologist include:

  • Specific physical or behavioral restrictions
  • Use of stimulants (alcohol, drugs, caffeine)
  • Precautions on severe loss of blood or body fluid (excessive hemorrhage, diarrhea, vomiting, dehydration), prolonged standing in hot baths/showers, and extreme hot/cold conditions
  • Precautions that should be taken before undergoing any medical/surgical procedure
  • Risk for bacterial endocarditis (tattoos, body piercing, or certain medical and dental procedures)
  • Restrictions on choice of occupation or recreational activities
  • Dietary guidelines
  • Sexuality, reproduction
  • Medical follow-up and compliance

Transitioning to Adult Care

As your child approaches age 18 he/she will need to start taking control of his/her health and learn how to manage his/her cardiomyopathy. It is very important that your teen understands the need to continue with regular medical visits and to follow his/her doctor’s treatment plan. Your teen’s cardiologist will let you know when it is time to transition care from a pediatric cardiologist to an adult cardiologist.

CCF offers a Transitioning to Adult Care Toolkit for teens to help make the process go smoothly. The forms are designed to help your child decide when he or she is ready to be his or her own health spokesperson. It covers preparing for a doctor’s appointment, talking with medical professionals about their condition and keeping track of their medical information. Various resources are also listed.

Emotional Care


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