Phone: 617-840-0528 | Fax: 617-724-7860
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Brian Tseng, MD, and Ann Neumeyer, MD, Pediatric Neurology |
The Pediatric Neuromuscular Clinic offers coordinated, multidisciplinary care for infants, children, and adolescents with a wide variety of neuromuscular disorders, including:
- Duchenne Muscular Dystrophy (DMD) or Becker Muscular Dystrophy
- Myopathies including limb-girdle muscular dystrophies, myotonic dystrophies, metabolic myopathies, mitochondrial myopathies, inflammatory and toxic myopathies
- Neuromuscular junction disorders including myasthenia gravis
- Peripheral myopathy disorders including Charçot-Marie-Tooth disease and other hereditary neuropathies, acquired neuropathies such as acute and chronic inflammatory demyelinating neuropathies, etc.
- Friedrich’s Ataxia
- Known affected family members with any of the above genetic conditions and concern in an infant or child with neuromuscular disorders
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Pat Costello (Sleep Lab), Craig Canapari, MD, Bernard Kinane, MD, Pediatric Pulmonary |
Multidisciplinary Neuromuscular Program and Custom Muscular Dystrophy Treatment Plans
Our neuromuscular specialists evaluate children with low muscle tone, muscle weakness, delayed motor skills, muscle pain, cramping, or who have an inherited neuromuscular disease or genetic risk. Initial comprehensive evaluations take place in a single day (Tuesdays) and depending upon referral requests a given patient may see a range of pediatric specialists, including pulmonologists, cardiologists, geneticists, endocrinologists, neurologists/neuromuscular specialists, physical therapists, orthotists, nutritionists, and social workers.
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Ana Maria Rosales, MD (center), with echocardiography technicians Jill Haskell and Cathy Davidson, Pediatric Cardiology |
The initial evaluation includes an extensive conference with parents as well as an examination of the child. Based on exam findings, a specific diagnosis will be sought. This effort sometimes involved blood DNA tests and possibly other studies including imaging and muscle/nerve biopsies. Based on a specific diagnosis, targeted recommendations from the multidisciplinary neuromuscular treatment team can best be offered. Some recommendations will include physical and occupational therapists as well as recommendations for early intervention or school-based therapy. Our team will send a summary note of findings to the referring physician and to the parents. Most patients will typically come to this neuromuscular clinic once or twice per year and efforts to be coordinated with the primary care provider is of utmost importance.
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Paul Boepple, MD, Pediatric Endocrinology |
Our Pediatric Neuromuscular Disorder Clinic staff will try to coordinate and make recommendations for the appropriate muscular dystrophy resources near the child's home. At MassGeneral Hospital for Children, we have a close association with colleagues in the adult neuromuscular clinic at Mass General, which allows not only easy conferencing with its world-renowned researchers, but also smooth continuity of care as the patient matures from adolescence to adulthood.
Family-Centered Care
At MassGeneral Hospital for Children, we know that the time of your child’s diagnosis and treatment is a very stressful one and we strive to provide an open, welcoming environment. We believe that no one knows a child as well as the parent does: parents, along with primary care providers, become our partners in a child's care and have an active voice in all treatment plans for neuromuscular disorders.
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Marsha Browning, MD, and genetics counselor Christa Haun, Pediatric Genetics |
