Neuromuscular Program
What is the Neuromuscular Program?
Our Neuromuscular Program’s team of experts evaluates and treats babies, children and teens with problems related to their muscles and nerves. These conditions can limit mobility and cause weakness, numbness, pain, spine and joint issues and other problems. We treat children with muscular dystrophy, spinal muscular atrophy (SMA), Charcot-Marie-Tooth (CMT) disease and other conditions.
We focus on understanding your child’s unique needs and improving their function, overall health and quality of life. At regular clinics in Seattle and an annual clinic in the Tri-Cities, we bring together experts from different specialties so your child gets the care they need on the same day. Children we treat have access to promising new therapies offered only in research studies.
Leading advocacy organizations recognize the high quality of care we provide and our research to improve the quality of life for patients with neuromuscular disorders. Seattle Children’s is named a Certified Duchenne Care Center (Parent Project Muscular Dystrophy), MDA Care Center (Muscular Dystrophy Association), Cure SMA Care Center and CMTA Center of Excellence (Charcot-Marie-Tooth Association).
How will the Neuromuscular Program meet my child’s needs?
Seattle Children’s offers the most comprehensive care in the Pacific Northwest for children with neuromuscular conditions.
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Comprehensive, team-based treatment
- To care for your whole child, we hold multidisciplinary clinics so your child sees their entire team in a single day. In addition to services in Seattle, we hold an annual neuromuscular clinic in the Tri-Cities.
- At the clinic, your child with see doctors, nurse practitioners and therapists from Rehabilitation Medicine, Neurology, Pulmonary and Sleep Medicine and Social Work. As needed, experts in Endocrinology, Gastroenterology and the Heart Center will also treat your child.
- Our team also includes a dietitian, genetic counselor and social worker to support your child and family.
- To make the clinic visit easier, you and your child may stay in 1 exam room, with team members coming in and out.
- We strive to do everything we can for your child at each visit so your family can avoid extra trips and enjoy life at home with fewer disruptions.
- Our experts partner with each other — and with you — to plan and provide all types of care your child needs.
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Complete care that meets the highest standards
- Each child we treat is unique. We customize your child’s treatment plan based on how their disease affects their health, function and comfort.
- As your child’s needs change, so will their treatment. Many neuromuscular conditions get worse over time. As needed, your child will get care from experts across Seattle Children’s.
- We are here whenever you need us. We provide care as needed, not just at regular neuromuscular clinic visits.
- We have a separate clinic focused on diagnosis for children who need assessment for a possible neuromuscular condition.
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Research to improve outcomes
- Our active clinical trials program means your child may have the chance to receive promising new therapies by taking part in research that matches their specific situation.
- Seattle Children’s helped test drugs that are now approved by the Food and Drug Administration — eteplirsen (Exondys 51) for Duchenne muscular dystrophy and nusinersen (Spinraza) for spinal muscular atrophy (SMA).
- To learn more about neuromuscular research at Seattle Children’s, email us at: muscleresearch@seattlechildrens.org.
Conditions We Treat
- Becker muscular dystrophy
- Charcot-Marie-Tooth disease
- Chronic inflammatory demyelinating polyneuropathy (CIDP)
- Congenital muscular dystrophy
- Congenital myopathy
- Duchenne muscular dystrophy
- Facioscapulohumeral muscular dystrophy
- Friedreich’s ataxia
- Guillan-Barré syndrome
- Limb-girdle muscular dystrophy
- Myasthenia gravis
- Myasthenic syndromes
- Myotonic muscular dystrophy
- Non-dystrophic myotonia
- Periodic paralysis
- Peripheral neuropathy
- Spinal muscular atrophy
Services We Offer
- Information about your child’s condition: We explain the outlook, current treatments, new therapies being developed, resources and support. We also talk with you about how the condition may be passed down in families.
- Electromyography (EMG), a test that shows how well your child’s nerves and muscles are working: It tests the electrical activity of muscles. The doctor will put a thin wire (needle electrode) through your child's skin into each muscle that we need to test.
- Medicines to help manage your child’s condition, ease their symptoms and prevent or treat problems.
- Physical therapy, occupational therapy and home exercises: These improve your child’s strength, movement and ability to do tasks by themselves. We also help your child adapt as their condition changes.
- Orthotics and bracing to support your child’s body or help them move.
- Equipment, such as a wheelchair, to help your child be active and independent.
- Surgery to release tight muscles and joints (contractures) or to treat severe curvature of the spine (scoliosis).
- Devices to help your child breath (bilevel positive airway pressure, Bi-PAP) or clear their airways (cough-assist machine) if their condition affects their lungs or breathing.
- Sleep studies to assess your child’s breathing while they sleep.
- Echocardiography to check if your child’s neuromuscular condition affects their heart muscle. Our heart specialists treat any problems that arise.
- Nutrition recommendations to support your child’s muscle strength, bones, digestion and overall health.
- Genetic counseling and coordination of genetic testing for patients and family members, when needed.
Read how Hudson received a heart transplant after muscular dystrophy damaged his heart muscle.
Scheduling an Appointment With the Neuromuscular Program
- If you would like an appointment, ask your primary care provider to refer you to our Neuromuscular Program, which is part of our Neurosciences Center. Providers, see how to refer a patient.
- If you have a referral, please call the Neuromuscular Program at 206-987-6678 to schedule an appointment.
- How to schedule an appointment with Seattle Children’s Neurosciences Center.
- If you already have an appointment, learn more about how to prepare.
- Learn about Rehabilitation Medicine resources such as useful links, videos and recommended reading for you and your family.
Telemedicine at Seattle Children’s
You may be offered a telehealth (virtual) appointment. Learn more.
Who’s on the team?
The Neuromuscular Program team includes doctors, nurses and therapists from Rehabilitation Medicine, Endocrinology, Neurology, Pulmonary and Sleep Medicine and the Heart Center.
We also have a dietitian, genetic counselor and social worker on the team, and we involve specialists from other areas of Seattle Children’s if your child needs them.
Providers in the program include:
Teams
Pulmonologists
Contact Us
- For more information, call 206-987-6678. If you would like an appointment, ask your child’s primary care provider to refer you to our Neuromuscular Program.
- If you have a referral, please call the Neuromuscular Program at 206-987-6678 to schedule an appointment.
- Providers, see how to refer a patient.
Paying for Care
Learn about paying for care at Seattle Children’s, including insurance coverage, billing and financial assistance.
Access Additional Resources
Get resources for patients and families, including information on food, housing, transportation, financial assistance, mental health and more.