Duchenne and other muscular dystrophies affect many different parts of the body, but they can particularly cause heart problems in boys and teenagers. Our doctors work with other specialists at the Comprehensive Neuromuscular Center to assess your child’s specific situation and provide advanced treatment options.
We treat both the heart and lungs together to delay heart and lung failure as long as possible. When you make an appointment, you may be meeting with a cardiologist and pulmonologist at the same time so they can work together to determine the best treatment plan.
Making an Appointment at the Neuromuscular Cardiology Clinic
We want it to be easy for you to get the care your child needs. You can contact us directly to schedule an appointment. Or, your child’s pediatrician or provider can refer your child to our clinic. We also take referrals from the emergency department and other hospitals.
Before Your Appointment
A nurse will contact you before your child’s appointment to prepare for the upcoming visit. During this call, we will:
- Gather information about symptoms, health history and past treatments
- Collect past test results and medical records (We’ll provide instructions on how to share this information with us.
- Provide pre-visit instructions
During this call, we can also answer questions you have before your child’s visit. Of course, you’re welcome to call any time before or after we meet with you and your child.
On the Day of Your Visit to the Neuromuscular Cardiology Clinic
Arriving at Your Appointment
You will need to arrive about 30 minutes before your child’s appointment—15 minutes to park and walk to our clinic and 15 minutes to check in at our registration desk.
If you are running late, please contact us.
At Your Appointment
Our goal during your first visit to the Neuromuscular Cardiology Clinic is to determine where your child is on the spectrum of heart and lung function. We may order imaging tests, such as X-rays, magnetic resonance imaging (MRI) scans, a positron emission tomography (PET) test, an echocardiogram or a cardiac computed tomography (CT) scan. Your child also may need additional lab tests.
At this first visit, we will be asking you and your child lots of questions. We want to understand how your child’s diagnosis is affecting their quality of life, and how we can best keep your child’s heart healthy for as long as possible.
Your first visit can last anywhere from 30 minutes for cardiology to an hour and a half for pulmonology.
After Your Visit to the Neuromuscular Cardiology Clinic
You will receive an “After Visit Summary” at the end of your appointment, which includes important information about upcoming appointments, test results, referrals to specialists, and all medications (including new prescriptions). It will also include contact information for your child’s care team, including how to reach the on-call cardiologist.