QUESTIONS TO ASK
Like many parents, you may have questions about how cardiomyopathy will affect your child’s daily routine. These questions will help you understand your child’s diagnosis and allow you to have a productive conversation with your child’s medical care team.
Before your child’s appointment, write down your questions and any information that you want to share with your child’s doctor. Do not be afraid to ask for clarification if something is not clear.
- What type of cardiomyopathy does my child have?
- What areas of the heart are affected - left side, right side, atria, ventricle, valves, septum?
- What is my child’s current heart function compared to what is normal?
- Is there any obstruction in the heart? (HCM patients)
- Do you think my child’s heart will recover, remain stable, or get worse?
- Is there any risk for arrhythmia? If so, how can it be controlled?
- Can you determine the cause of my child’s cardiomyopathy?
- Does my child need additional testing to determine the cause of his/her condition?
- Does my child need to be seen by other specialists for further evaluation?
- How should my child’s condition be monitored and how often?
- What are my child’s treatment options? What are the risks associated with these treatments?
- How do the medications that you are prescribing help my child’s heart?
- How and when should I give the medication to my child?
- What are common side effects for each prescribed medication?
- What should be done if a dose is missed or my child vomits?
- What precautions do I need to know for feeding, compatibility with other drugs, and activity restrictions?
- Are there any over-the-counter medications that my child should avoid while taking his/her medication?
- Does my child need a myectomy (HCM patients), implantable pacemaker, or defibrillator?
- Are there any special precautions, such as objects or areas, that my child needs to avoid if he/she has a pacemaker/defibrillator?
- Given my child’s current condition, what is the likelihood of a heart transplant in the future?
Family Screening and Genetic Testing
- Which family members should be screened and how often?
- Should my child and other family members undergo genetic testing?
- Will the results from genetic testing change the course of treatment for my child?
- What issues should I be aware of in considering genetic testing?
- What are the chances that my future children will inherit or develop cardiomyopathy?
Living with the Disease
- What limitations are there on exercise and sports?
- When should I contact the pediatric cardiologist versus the pediatrician/general practitioner?
- Which symptoms indicate a medical emergency?
- Are there any special precautions on dentistry, vaccination, or travel?
- Are there any dietary or hydration recommendations?
- Are there any cardiomyopathy research studies or registries that my child should enroll in?