Neuromuscular Program

at Primary Children's Hospital

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 we treat

Charcot-Marie-Tooth Disease (CMT)
Dermatomyositis
Duchenne Muscular Dystrophy
Guillain-Barre syndrome
Muscular Dystrophies
Myasthenia Gravis
Polymyositis
Spinal Muscular Atrophy

Pediatric Neurology

What sets us apart

Advancing pediatric neuromuscular care

Multidisciplinary Team

Our neuromuscular team includes experts in neurology, physical therapy, genetics, pulmonology, nutrition, speech, neuropsychology, social work, and more. We collaborate with cardiology, endocrinology, and all pediatric services at Primary Children’s Hospital

Newborn Screening

Utah was the first state to implement permanent statewide newborn screening for Spinal Muscular Atrophy. Any baby born after January 29, 2018 will been screened for Spinal Muscular Atrophy. For more information, please visit the Utah State Department of Health

Research

The University of Utah Program for Inherited Neuromuscular Diseases (UPIN) is committed to improving the lives of children and adults with neuromuscular disorders. We participate in many studies involved in the development of treatment of neuromuscular disorders.

Primary Children's Hospital

Discover what to expect during your visit to Primary Children's Hospital and explore our patient services. We're here to support you and your child, ensuring comfort and providing the care needed for a great experience throughout your stay.

Your visit Patient support

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.

What to expect

Common questions about our neuromuscular program.

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

The Multidisciplinary Neuromuscular Clinic is a comprehensive and multidisciplinary program. As such, during your child's visit, you and your child will meet with several members of the team including neurology, nutrition, physical therapy, speech-language pathology, respiratory therapy, pulmonology, social work, and nurse coordinator/educator. These visits can last several hours; we recommend patients and families plan for the visit to last at least 2 hours.

After your appointment

All patients will receive a printed summary report of the visit, providing information regarding management, any testing needed, and follow up appointment recommendations from the visit. Information on how to contact us between appointments is also on the report.

How often will I need to be seen in this clinic?

Every 4 - 12 months, based on age, diagnosis, and any ongoing treatments.

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.

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/

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.

Where can I learn more about my child's neuromuscular disease?

National recognition

Intermountain Primary Children's Hospital is ranked by U.S. News & World Report as one of the nation's best children's hospitals in 11 of 11 pediatric specialties, including neurology.

Learn more

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