Brain & Spine center
The Neuromuscular Program is a multidisciplinary clinic that specializes in the evaluation, diagnosis and care of infants, children, teens and young adults with neuromuscular disorders. The diagnosis of a neuromuscular disorder in a child can be difficult for families. Our team provides family-centered care and support through the process of diagnosis and treatment of neuromuscular disorders.
Conditions and Treatments:
What to Expect
After Your Appointment
Before Your Appointment
Please arrive 15 minutes prior to your scheduled appointment time to allow enough time to fill out intake paperwork. Please check in on the 3rd floor of the Eccles Outpatient Building at Station 7. There are several things you can do before the appointment to help us accurately manage your child’s neuromuscular condition:
- Please bring any orthotic braces your child currently wears
- Please bring any respiratory equipment your child currently uses, such as his or her BiPAP machine
During Your Appointment
Frequently Asked Questions
How often will I need to be seen in this clinic?
Every 4 - 12 months, based on age, diagnosis, and any ongoing treatments.
What is a BiPAP machine?
BiPAP stands for bilevel positive airway pressure. This is a machine that helps people breathe. This machine delivers two different air pressures; a high pressure while you inhale to help push air in, and a lower pressure while you exhale to help breathe air out. People with neuromuscular conditions often don’t have the respiratory muscle strength to breath well while they are asleep, so a BiPAP may be needed. Pulmonary function testing and sleep studies help determine whether this machine is needed.
What is a cough assist machine?
Should my child receive a seasonal influenza vaccine?
Yes, all children – especially those with neuromuscular disease – and their parents should receive the seasonal influenza vaccine every year. Influenza can cause mild to severe illness, but at times lead to death. Influenza can also lead to serious secondary infections like pneumonia. In 2017-2018, influenza hospitalized 960,000 people and killed 79,000 people. For more information on vaccine recommendations please visit: https://www.parentprojectmd.org/care/care-guidelines/by-area/vaccination-recommendations/
Do I need to have a primary care provider?
Yes, we believe that every child needs a medical home with a primary care provider (PCP). A PCP is an important member of the care team for a child with a neuromuscular disorder.
Where can I learn more about my child's neuromuscular disease?
What Sets Us Apart
What is Multidisciplinary Care and Why is it Important?
Neuromuscular conditions affect more than one area of the body. Muscles diseases can affect how well you can move, how you eat, and how well you can breathe. Because of this, many children with neuromuscular conditions have to see multiple providers. Our neuromuscular program puts all of these people in one place: children seen in our multidisciplinary neuromuscular clinic see all of the specialists they need in one appointment. This is cost- and time- efficient. It is safer care, because it leads to better communication between specialists to deliver comprehensive care. Multidisciplinary care puts the patients and families at the center of everything we do.
About Our Multidisciplinary Team
Our multidisciplinary neuromuscular team includes experts from neurology, physical therapy, genetic counseling, pulmonary, respiratory therapy, nutrition, speech-language pathology, neuropsychology, and social work, along with a clinical care coordinator, program coordinator, and MDA health care specialist. Our clinic also has care partners with cardiology and endocrinology, and all pediatric services at Primary Children’s Hospital.