Neuromuscular Medicine Program

Neuromuscular Medicine Program
Conditions We Treat
Meet the Team
Treatments

The Neuromuscular Medicine Program at Children’s National Hospital provides expert comprehensive and compassionate care for the evaluation, management and treatment of infants, children and teenagers with neuromuscular conditions. As one of the largest referral sites for children for neuromuscular care and treatment in the Washington, D.C., region, our program leverages the expertise of our specialists to provide highly coordinated care that emphasizes improving your child’s quality of life and health.

Our Providers

Our pediatric specialists provide personalized care for your child’s physical, mental and emotional health needs.

Meet the Team

Contact Information

For appointments, please call 1-888-884-BEAR (2327) and for information, call 202-476-3611.

Appointments New Patients

Our detailed diagnostic testing and expert care team allows for personalized care for your child, whether they are in the early stages of diagnosis or under long-term care for rare diseases.

Choosing Children’s National for Pediatric Neuromuscular Care

Neuromuscular diseases frequently lead to some form of weakness or abnormal motor development. These can be disorders that affect the motor neurons, nerves, muscles or the communication between nerves and muscles (neuromuscular junction). Since neuromuscular disorders frequently cause muscle weakness, children affected by neuromuscular disease require multidisciplinary care aimed at maintaining general health, promoting growth and development and optimizing functional activities.

This journey may begin for some families with a prenatal diagnosis or for parents who are identified as carriers for a hereditary neuromuscular disease, to babies identified by newborn screening with particular conditions and to those infants or children who come to our clinic after onset of symptoms. In all cases, we are here for your child and your family to provide in depth and up to date guidance, support, care and treatment.

What Our Program Offers

Top-Ranked Care

Children’s National Hospital has consistently been named one of the top children’s hospitals ranked by U.S. News & World Report. Our team consists of nationally and internationally recognized team members actively involved in leading research, advocacy and clinical education. Our Neuromuscular Medicine Program has received a number of national recognitions including:

Parent Project Muscular Dystrophy’s (PPMD): Certified Duchenne Care Center
Muscular Dystrophy Association: Care Center
Cure SMA: Care Center Network
Charcot-Marie-Tooth (CMT) Association: Center of Excellence

Care for Your Child's Physical and Mental Health

We’re dedicated to giving your child the highest quality of life in and out of a clinical setting. In our comprehensive Neuromuscular Medicine Program, we offer support for social, educational and emotional difficulties that often accompany neuromuscular conditions. Our specialists are nationally recognized leaders in care, bringing high quality and cutting edge diagnostics, research and treatment approaches to improve the care for your child.

Consolidated Appointments

Several specialists from our program may see your child on the same day in a multidisciplinary clinic, minimizing the burden of multiple appointments for families and emphasizing a coordinated care model approach. These specialists may include:

Neurologist
Physiatrist
Pulmonologist
Cardiologist
Endocrinologist
Physical therapist
Occupational therapist
Bone health specialist
Dietician
Social worker
Genetic counselor
Research coordinator
Clinical program coordinator
Patient-family advisor/advocate

Diagnostic Services

In a detailed evaluation, our experts in Neuromuscular Neurology look for signs and symptoms suggestive of a neuromuscular disease in your child, and tailor the diagnostic workup and treatment plans specially for each child. Your visit may also include evaluation with a genetic counselor with expertise in neuromuscular disorders. Among our detailed diagnostics tests are:

Electrodiagnostics (EMG and nerve conduction study)
Genetic testing
Muscle ultrasound
Serologic (blood) testing
Skin, muscle or nerve biopsies

Patients who remain undiagnosed despite thorough evaluations may also benefit from input from world renowned neuromuscular experts from the National Institutes of Health who participate in the Children’s National Neuromuscular Undiagnosed Disease Clinic.

Groundbreaking Medical Therapies

Children's National Hospital has been actively involved in clinical and basic science or laboratory research and the Center for Genetic Medicine Research has led groundbreaking research in neuromuscular medicine. Our team utilizes up to date standard of care practices for various neuromuscular disorders, combined with expedited initiation of therapies, which may include:

Spinraza™, ZOLGENSMA^® and Evrysdi™ for spinal muscular atrophy; and
Exondys 51, VYONDYS 53, AMONDYS 45™ and EMFLAZA^® for Duchenne muscular dystrophy.

Additional disease specific therapies are used to treat conditions such as myasthenia gravis, congenital myasthenic syndrome, Pompe disease, Guillan Barre Syndrome/CIDP, infantile botulism and myotonic disorders.

Camps and Community Engagement

Conditions We Treat

Learn more about the conditions we treat in the Neuromuscular Medicine Program.

Learn about neuromuscular conditions

Treatments

At Children's National, we treat the whole child, paying special attention to your child's physical and emotional needs. Find out about available treatments from the Neuromuscular Medicine Program.

Learn more about our treatments

More About the Neuromuscular Medicine Program

Specialized Programs

To expedite evaluation, diagnosis and treatment, our specialists operate three clinics:

The Neuromuscular Clinic is the gateway to our program. Specialists review medical histories and perform detailed clinical exams. Additional blood work, muscle ultrasound or MRI (magnetic resonance imaging), muscle biopsy, nerve conduction studies, electromyograms and genetic testing may follow to determine an underlying diagnosis.
The Muscular Dystrophy Association (MDA) Care Center is a one-stop clinic featuring interdisciplinary care for neuromuscular diseases. In a single visit, children diagnosed with muscular dystrophies are attended to by experts in neurology, rehabilitation medicine, pulmonary medicine, cardiology, genetics, bone health, nutrition, physical and occupational therapy and social work. Team members throughout our program are also engaged in ongoing research.
The Diagnostic Clinic specializes in diagnosis and treatment of rare and unique neuromuscular disorders. This clinic benefits from close collaboration with experts from the National Institutes of Health.

Services We Provide

Our Neuromuscular Program offers the following services:

Comprehensive clinical evaluations
Genetic counseling: We provide in depth and compassionate genetic counseling and testing ranging from personalized sequencing panels tailored to your child’s symptoms to broad testing such as whole exome sequencing approaches

We also offer treatments and diagnostic testing such as:

Braces, splints, Angel Arms and WREX
Leading-edge medications like Spinraza™ and ZOLGENSMA®, new therapies for spinal muscular atrophy, and Exondys 51 to treat Duchenne muscular dystrophy
Nutrition counseling
Physical therapy
Positioning aids to help children sit, stand or lie down
Psychological counseling
Speech and swallowing therapy
Electrodiagnostics (EMG)/nerve conduction studies
Muscle ultrasound
Skin and muscle biopsy
Genetic testing (eg: next generation sequencing and whole exome sequencing)
Serologic testing (blood testing)
Augmentative communications
Surgical interventions
Pulmonary function studies
Echocardiogram/cardiac MRI
Durable medical equipment
Occupational therapy

Referring providers

Contact Information

Referring providers can contact us at 202-476-6193 or via email to Kathleen Smart.

Call 202-476-6193 Email Kathleen Smart

Locations

Main Hospital

111 Michigan Avenue, NW Washington, Washington DC 20010

1-888-884-2327

Emergency Department Info

Specialty Care

Family Resources

PDF

Download the neuromuscular new patient form

PDF

Download the neuromuscular follow-up form

Helpful Websites

A physical therapist helps a toddler-aged girl climb stairs

Seeing the Signs

Is there is a history of neuromuscular disease in your family? Get the earliest intervention possible for your child if certain conditions have been observed.

Learn about the warning signs