What to Expect at a Neuromuscular Disease Appointment

If you are a new patient the Neuromuscular Disease Clinic, please know that your first appointment may be two hours or more in order for you to meet multiple members of our team and recommend the best treatment for your child. Learn more about what to expect before, during and after your appointment.

• Before your visit

  We encourage you to arrive early and to bring any prior testing or outside records that you might have.  Before your first appointment with us, you may be asked to complete ECGs and/or pulmonary function testing. This gives our doctors the information we need to make the most of your appointment. After being seen by one of our specialists, you may also be seen by one or more of our multidisciplinary team members including physical, occupational or speech therapists. You may also receive a consultation from our clinic nutrition services as well as case management and social work services.

  While meeting so many teams and specialists in one visit may be a lot to take in, keep in mind that our team approach is designed to provide your child and your family with quality care in every aspect of the disease process including medical, emotional and social support.

• During your visit

  During this first visit with the team, be sure to ask any questions of our team members. Some families bring a notepad with questions written down . Whatever way you choose to communicate with us, we’re here to answer your questions…and to listen.   

  Oftentimes, an extensive work-up may be needed to make a diagnosis.  We may recommend multiple types of tests including blood work for DNA testing, and EMG/NCS or a muscle biopsy.

• After your visit

  Once the diagnosis is established, we will provide you with additional educational materials and resources that best meet your child’s needs. Our goal is to make the most of your visit to Children’s Health.