There are many questions that you can ask your child’s medical care team. Before your visit, be prepared and write down your questions. Do not be afraid to ask for clarification if there is something you do not understand.
About the Disease
- What type of cardiomyopathy does my child have?
- What areas of the heart are affected - left side, right side, atrias, ventricles, valves, septum?
- What is my child’s current heart function?
- Is there any obstruction in the heart? (HCM patients)
- How will cardiomyopathy affect my child’s overall health? How serious is his/her condition?
- How do you think the disease will progress in my child? Do you think my child’s heart will recover, remain stable or get worse?
- Is there any evidence of arrhythmia? If so, how can it be controlled?
About the Evaluation and Treatment
- What tests are used to diagnosis his/her condition?
- Does my child need to be seen by other specialists for further evaluation?
- Can you determine the cause of my child’s cardiomyopathy?
- What genetic or screening tests are needed to determine the cause of my child’s cardiomyopathy?
- How should my child’s condition be monitored? How often should he/she be evaluated?
- Which symptoms indicate a medical emergency?
- What are my child’s treatment options? What are the risks associated with these treatments?
- What medications will you prescribe for my child and what does the medication do?
- What are the recommended dosages and frequency of doses?
- What are the potential side effects from the prescribed medication?
- What should be done if a medication dose is missed or my child vomits the medication?
- Are there any over-the-counter medications that my child should avoid while taking heart medications?
- Will my child eventually need a myectomy (HCM patients), implantable pacemaker or defibrillator?
- Are there any special precautions such as objects or areas that I need to avoid if my child has a pacemaker/defibrillator?
- What is the likelihood of a heart transplant given my child’s current condition?
About Family Screening and Family Planning
- Which other family members should be screened for the disease and how often?
- Should my child and other family members undergo genetic testing? What are the pros and cons of genetic testing?
- Will genetic testing change the course of treatment for my child?
- If another family member is found to carry the same genetic mutation as my child, what is the likelihood that he/she will develop cardiomyopathy?
- Once I do genetic testing, do I need to be concerned with genetic discrimination?
- If I have more children, what are the chances that they will also have a genetic mutation and develop cardiomyopathy?
About Living with the Disease
- What life style changes do I need to be aware of for my child?
- When should I contact the pediatric cardiologist versus the pediatrician/general practitioner?
- Should my child wear a medical tag bracelet or necklace? If so, what information should be on it?
- Are there any special precautions in regards to dentistry, vaccination or travel?
- What limitations are there on exercise and daily activities?
- Are there any special precautions to be taken to avoid common illnesses like colds or the flu?
- Are there any dietary or hydration recommendations?
- Do you recommend a home automatic external defibrillator (AED)?
- Are there any research studies or registries in which my child should enroll?
- Are there any other resources that I should know about to help manage my child’s condition?