Neuromuscular Disorder Treatments
Children’s Hospital Los Angeles delivers the highest level of neuromuscular disease care. Trusted pediatric experts from a variety of specialties work together to tailor therapies for your child.
When new care methods become available, Children’s Hospital is often among the first places in the country you’ll find them. These offerings are among the many reasons patients from all over the world put their trust in our program.
Children’s Hospital Los Angeles is at the forefront of neuromuscular disorder care that manages symptoms. We implement treatments quickly after they are approved by the U.S. Food and Drug Administration. We also offer innovative medications as part of clinical research trials.
Neuromuscular treatments we offer include:
- FDA-approved genetic therapies for Duchenne muscular dystrophy and spinal muscular atrophy
- Braces and orthotics
- Medication therapy such as Spinraza (nusinersen)
- Occupational therapy
- Physical therapy
- Orthopedic surgery (such as scoliosis surgery)
- Mobility assessment, including wheelchairs and power chairs, beds, vehicles, etc.
- Special equipment assistance
Braces and orthotics
Experts at the Jackie and Gene Autry Orthopedic Center collaborate with the Neurological Institute to provide neuromuscular treatment. We may prescribe various orthotics for the arms or legs to help with mobility, maximize function, and manage contractures, a complication of neuromuscular disorders.
Our specialists prescribe adjustments to the orthotics to customize them to your child. We also consider other options for contracture management such as serial casting. We discuss both conservative and surgical options for scoliosis management, as scoliosis is common in patients with neuromuscular disorders.
Our clinic uses FDA-approved medications which include:
- Spinraza (nusinersen)
- Zolgensma (Onasemnogene abeparvovec)
- Vyondys 53 (golodirsen)
- Exondys 51 (eteplirsen)
- Amondys45 (casimersen)
- Viltepso (vitolarsen for exon 53 skpping)
- Evrysdi (risdiplam)
- Emflaza (deflazacort)
In the Neuromuscular Disorders Center, occupational therapists (OTs) perform appropriate upper extremity evaluations, assess for activities of daily living, and evaluate swallow function. Our OTs work with patients and their families to create upper extremity stretching programs for the home, recommend appropriate upper extremity braces.
Our OTs also collaborate with Neurology, Orthopedics and Physical Therapy to recommend durable medical equipment for the home to improve abilities to perform activities of daily living. They work with California Children’s Services (CCS) and other community OT providers to assure continuity of care, and with our registered dietitian to select the most appropriate diet for a patient, and track progress or decline in upper extremity function.
Physical therapists (PTs) in the Neuromuscular Disorders Center perform appropriate lower extremity evaluations, assess patients’ ability to have access to their homes and communities, and assess how to give patients mobility. Our PTs work with patients and their families to create lower extremity stretching programs for the home, recommend appropriate lower extremity braces,
PTs also work with Neurology, Orthopedics and Occupational Therapy to recommend durable medical equipment for the home to improve abilities to perform activities of daily living. They make recommendations to prevent pressure injuries, work with CCS and other community PT providers to assure continuity of care and delivery of mobility equipment, and track progress or decline in lower extremity function.
Nutrition and Neuromuscular Disorders
Patients with neuromuscular disorders have unique dietary needs. For example, patients with Duchenne muscular dystrophy have a tendency to gain weight because of steroids, and patients with other neuromuscular disorders have trouble getting enough calories because of fatigue and weakness of the muscles used to chew. Our expert dietitian with over a decade of experience in neuromuscular care is able to work with families to navigate their unique nutritional needs.
Children’s Hospital leads the way in neuromuscular care and innovation. For example, our neuromuscular dietitians pioneered a program for preventing further muscle breakdown when patients with spinal muscular atrophy are admitted to the hospital.
Our dietitians regularly present at conferences regarding the interplay between nutrition and neuromuscular disorders. Patients in our clinic benefit from direct access to this nationally recognized expertise.
Comprehensive Neuromuscular Care
When your child comes to the Neuromuscular Disorders Center, we provide access to every relevant subspecialist in one convenient location in Los Angeles. Find out more about the Neuromuscular Disorders Center.