At Boston Children’s Hospital Neuromuscular Program, we care for infants, children and teens with neuromuscular disorders.
The neurologists and other specialists in our program are experienced in treating children with muscular dystrophy and other myopathies, neuropathies, motor neuron diseases and neuromuscular junction disorders.
Our program, one of the first clinics providing comprehensive care for patients with neuromuscular diseases, was established in 1977. Today, we continue to offer the highest level of diagnostic and treatment services.
We constantly work to improve the care we are able to give our patients. We conduct numerous clinical studies on neuromuscular diseases, and we are one of five sites in the United States funded by the Muscular Dystrophy Association to conduct multi-center clinical studies on muscular dystrophy. Our physicians also have strong ties to research laboratories at Boston Children’s that are finding the molecular underpinnings of neuromuscular diseases and developing potential treatments.
Our Neuromuscular Program at Boston Children’s Hospital brings together a team of specialists from Neurology, Orthopedic Surgery, Physical Therapy and Genetics, each of whom is experienced in caring for children with neuromuscular disorders. We work together to develop a treatment plan that meets your child’s unique needs and maximizes his quality of life.
The specialists in our program are experienced with the following disorders, as well as many others:
- muscular dystrophies
- Duchenne and Becker muscular dystrophy
- Emery-Dreifuss muscular dystrophy
- myotonic dystrophy
- limb-girdle muscular dystrophies
- facioscapulohumeral muscular dystrophy (FSHD)
- congenital muscular dystrophies
- other myopathies
- congenital myopathies
- glycogen storage diseases and other metabolic myopathies
- polymyositis and dermatomyositis
- Charcot-Marie-Tooth disease
- Guillain-Barré syndrome
- chronic inflammatory demyelinating polyradiculoneuropathy (CIDP)
- Friedreich ataxia
- traumatic neuropathies, including sports injuries and Erb’s palsies
- motor neuron diseases
- neuromuscular junction disorders
A team of dedicated specialists
A hallmark of our clinic is that it brings together the different specialists whose expertise is needed to care for children with neuromuscular disorders. That means that your child will be able to see his neurologist, orthopedic surgeon, and physical therapist at the same time, in the same place. And it means that we all work closely with each other to develop the best therapeutic plan for your child. The clinic is held on most Mondays.
Our network includes colleagues in Cardiology, Pulmonary, Nutrition, Gastroenterology and other specialties at Children’s who are experienced in caring for children with neuromuscular disorders. So if your child needs to see a doctor or therapist outside our clinic, we can send you to someone who has specialized expertise and who will be sensitive to your child’s unique needs.
We also work with the Augmentative Communication Program at Children’s, which uses a variety of innovative strategies to help our patients communicate effectively.
Muscular Dystrophy Association (MDA)
The Muscular Dystrophy Association (MDA) has supported our clinic for decades. A representative from the MDA attends most of our Monday clinics to answer questions families may have about MDA services and resources.
Pioneers in muscular dystrophy
Many of the genes responsible for muscular dystrophies and other neuromuscular disorders were found right here at Boston Children’s. Today, the researchers who made these discoveries are continuing to learn more and are working to develop treatments. See the Our innovative approach tab to read about what they’re doing.
Our diagnostic services
We use a number of different tests to help us accurately diagnose your child’s disorder and evaluate his condition. Our program takes advantage of several superb clinical and laboratory resources at Boston Children’s:
Electromyography (EMG) and nerve conduction velocity (NCV) studies are done to record the activity of muscles and motor nerves. Boston Children’s has its own EMG laboratory, which is staffed by the neurologists in the Neuromuscular Program.
Muscle biopsy is also useful in diagnosing muscle disease and sometimes nerve damage. The procedure is performed under general anesthesia, but most children are able to go home the same day. Frederic Shapiro, MD, the orthopedic surgeon on our Neuromuscular team, performs most of our muscle biopsies. Boston Children’s neuropathology specialists provide us with expert analysis of the tissue from these biopsies.
Genetic testing is a powerful tool for diagnosing inherited neuromuscular disorders, and we are experienced in interpreting the results. In most cases, the testing is done right here in the Boston Children’s Genetics Diagnostic Laboratory.
Improving genetic testing is an active area of research for us. Recently, we developed a method that allows us to screen for muscular dystrophy genes far more efficiently than has been possible thus far.
For some children, the cause of their disease remains a mystery even after extensive testing, so our researchers continue to search for new genetic changes that may explain neuromuscular diseases. See the Research and Innovation tab to learn more about this work.
Our specialists are dedicated to anticipating any complications that your child may experience from his disease and developing the best therapeutic plans to manage them.
In addition to caring for your child in our clinic and with other specialists at Boston Children’s, we can work with providers who are closer to your home. For example, when our physical therapist meets with families during our Monday clinics, she reviews home exercise regimens and often helps to identify physical therapy resources in families’ local communities.