Frequently Asked Questions

I don’t live in the area. Can I still receive care from you?

Yes. We often conduct appointments via telehealth for patients located anywhere in California. Sometimes it’s helpful to see your child in person, especially for the initial evaluation, but most of our work can be conducted virtually. We are also happy to comanage care with your child’s local cardiologist or primary care physician, or simply be a part of the initial diagnostic process.

What can I expect during my child’s initial evaluation?

During the appointment, your pediatric cardiologist and genetic counselor will work together to provide the following:

• A thorough assessment of your family history.
• Discussion of the diagnosis, including:
  • Suspected underlying cause (including looking for an underlying medical cause).
  • Risk to other relatives and recurrence risk for future children.
• Discussion of genetic testing options and pre-/post-test genetic counseling, if applicable.
• Treatment options and dietary/exercise recommendations.
• Screening recommendations and coordination of care for at-risk family members.

Depending on your child’s reason for referral and his or her medical history, the doctor may also recommend cardiac imaging tests.

If my child is diagnosed with a lipid disorder, does it mean they are currently at risk for a heart attack or stroke?

For the vast majority of childhood lipid disorders, the risk for heart attack or stroke does not begin until adulthood. With appropriate preventive care, potential medical treatment, and regular monitoring, your child can likely live a long, healthy life free of cardiac events. Since lipid disorders take time to influence health, we approach treatment thoughtfully, always evaluating the impact of our care decisions and adjusting as needed to create the ideal long-term care plan for your child. Our proactive, patient-centered approach greatly reduces the risk of premature heart disease and early heart attacks.

I just found out that I have familial hypercholesterolemia (FH). Should I get my children tested even if they don’t have any symptoms?

Yes, your child has a 50% chance of inheriting FH, and 90% of people who have FH don’t know they have it, putting them at risk for early heart disease and heart attacks. Risk reveals itself in the frequency of heart events in family members and relatives. Most people don’t experience symptoms with FH and other lipid disorders, so it’s best to get everyone in your family checked. Even if your children are star athletes and eat perfectly, they could still be at risk for a heart event later in life. Think of it as an invisible disease that doesn’t show itself until later in life as a heart problem. The good news is that heart disease later in life is preventable when someone knows they have FH. If appropriate, our team may offer patients the opportunity to enroll in the FH Foundation’s national database, a database aimed at better understanding how to care for families with FH.

What is a genetic counselor, and what do they do?

Genetic counselors are health care professionals with specialized graduate training in the areas of medical genetics and counseling. They provide information and support to individuals or families who have genetic disorders or may be at risk for inherited conditions. Genetic counselors also provide support to help you and your family deal with emotions that come with the diagnosis of an inherited condition and answer any questions you may have. To get the most out of your genetic counseling appointment, we encourage you to gather information about your family history before your appointment. Your genetic counselor will want to know about any medical conditions—especially any heart-related conditions—that you or your family members and extended family members may have.

Do you always do genetic testing?  

No, we do not always perform genetic testing. Our genetic counselor first collects data about your family history of lipid disorders and works with the doctor to determine a possible cause for a patient’s lipid condition. If we strongly suspect an inherited component, we offer genetic testing and discuss how such tests may benefit you and your family. We have access to a wide variety of cutting-edge genetic tests, which often can be coordinated remotely (i.e., a saliva kit can often be sent to the patient’s home). Cost of testing depends on the insurance policy. It is entirely up to you whether you would like to pursue this testing if this is offered during the appointment.