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Pediatric Neuromuscular Service

The Pediatric Neuromuscular Clinic at MassGeneral Hospital for Children offers coordinated, multidisciplinary care for a wide variety of neuromuscular disorders.

Contact the Pediatric Neuromuscular Service: 617-643-4645

Overview

The Pediatric Neuromuscular Clinic offers coordinated, multidisciplinary care for infants, children and adolescents with a wide variety of neuromuscular disorders, including:

  • Dystrophinopthy and other congenital muscular dystrophies
  • Myopathies, limb-girdle muscular dystrophies, myotonic dystrophies, metabolic myopathies, mitochondrial 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
  • Spinal Muscular Atrophy (SMA)
  • Known affected family members with any of the above genetic conditions and concern with an infant or child with neuromuscular disorders

Multidisciplinary Neuromuscular Program and Individualized Treatment Plans

Our neuromuscular specialists evaluate children with hyporeflexia, 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 (pediatric and adult)
  • Geneticists
  • Endocrinologists
  • Neurologists/neuromuscular specialists
  • Physical therapists
  • Orthotists
  • Nutritionists
  • Financial counselor
  • Social worker

It is very important that your insurance carrier (and if necessary your PCP assistance) authorize your child’s appointments at MassGeneral Hospital for Children beforehand.

The initial evaluation includes an extensive interview with family as well as an examination of the child. Based on exam findings, clinicians will seek a specific diagnosis. This effort sometimes involves blood DNA tests and possibly other studies including imaging and muscle/nerve biopsies.

Based on a specific diagnosis, which is the first priority, our multidisciplinary neuromuscular specialists can best offer targeted recommendations. Some recommendations will include physical and occupational therapists as well as early intervention or school-based therapy. Our team will send a summary note of findings to the referring physician and to the parents.

The local primary care provider is the most important member of the care team. Most patients will typically come to our clinic once or twice per year and it is of the utmost importance that we coordinate with the families’ primary care providers, especially if not local to Boston.

Our Pediatric Neuromuscular Disorder Clinic staff will 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 Massachusetts General Hospital, which allows not only easy access to its world-renowned clinicians, but also smooth continuity of care as the patient matures from adolescence to adulthood.

Family-Centered Care

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, family-centered environment. We believe that no one knows a child as well as the parent does; as such, parents and child, primary care providers and our staff join to form a team. This team aims to optimize a child's care and function, and families have an active voice in all treatment plans for their child.

Doctors

  • Benavidez, Oscar J., MD

    617-726-3826

    Accepting New Patients

    Clinical Interests
    • Congenital Cardiac MRI
    • Fetal Cardiology
    • Pediatric cardiology
    • Echocardiography
    Board Certifications
    • Pediatrics, American Board of Pediatrics
    • Pediatric Cardiology, American Board of Pediatrics
    Locations
    • Boston: Pediatric Cardiology
    • Braintree: Mass General Hospital for Children - Braintree
  • Boepple, Paul Alfred, MD

    617-726-2909

    Accepting New Patients

    Clinical Interests
    • Adrenal disorders
    • Pituitary disease
    • Diabetes management
    • Adolescent menstrual disorders
    • Growth disorders
    • Diabetes mellitus type 1
    • Diabetes mellitus type 2
    • Disorders of puberty
    • Obesity medicine
    • Pediatric endocrinology
    Board Certifications
    • Pediatrics, American Board of Pediatrics
    • Pediatric Endocrinology, American Board of Pediatrics
    Locations
    • Boston: Pediatric Endocrine Associates
    • Danvers: Mass General/North Shore Center for Outpatient Care
  • Cook, Anna L., MD

    617-726-8707

    Accepting New Patients

    Clinical Interests
    • Asthma
    • Bronchopulmonary dysplasia
    • Neuromuscular disorders
    • Pediatric pulmonary diseases
    • Cystic fibrosis
    Board Certifications
    • Pediatrics, American Board of Pediatrics
    • Pediatric Pulmonology, American Board of Pediatrics
    Locations
    • Boston: Pediatric Pulmonary
    • Braintree: Mass General Hospital for Children - Braintree
  • Grottkau, Brian Edward, MD

    617-726-8523

    Accepting New Patients

    Clinical Interests
    • Pediatric orthopaedics
    • Pediatric sport injuries
    • Pediatric fractures
    • Pediatric spine surgery
    • Adult spine surgery
    • Scoliosis
    • Clubfoot
    • Hip and leg abnormalities
    Board Certifications
    • Orthopaedic Surgery, American Board of Orthopedic Surgery
    Locations
    • Boston: Orthopaedic Spine Center
    • Danvers: Mass General/North Shore Center for Outpatient Care
  • Kinane, Thomas Bernard, MD

    617-726-8707

    Accepting New Patients

    Clinical Interests
    • Pulmonary disorders
    • Asthma
    • Bronchopulmonary dysplasia
    • Interstitial lung disease
    • Congenital pulmonary disease
    • Exercise physiology (particularly exercise intolerance)
    • Obstructive sleep apnea
    • Respiratory disorders affecting sleep and exercise
    • Primary ciliary dyskinesia
    • Congenital central hypoventilation syndrome
    Board Certifications
    • Pediatric Pulmonology, American Board of Pediatrics
    • Sleep Medicine, American Board of Internal Medicine
    Locations
    • Boston: Pediatric Pulmonary
    • Boston: Pediatric Sleep Lab
  • Kreher, Jeffrey B., MD

    617-726-8523

    Accepting New Patients

    Clinical Interests
    • Pediatric sports medicine
    • Pediatric orthopaedics
    • Pediatric fractures
    • Overuse injuries
    • Scoliosis
    • Alignment disorders
    • Hip and leg abnormalities
    • Care of multisport athletes
    Board Certifications
    • Pediatrics, American Board of Pediatrics
    • Sports Medicine, American Board of Pediatrics
    Locations
    • Boston: Orthopaedic Associates
    • Danvers: Mass General/North Shore Center for Outpatient Care
  • Leigh, Fawn A., MD

    617-724-8770

    Accepting New Patients

    Clinical Interests
    • Neurofibromatosis
    • Pediatric Neuromuscular disorders
    • Neurogenetic disorders
    • Clinical research
    • Drug Development
    Board Certifications
    • Neurology with Special Qualifications in Child Neurology, American Board of Psychiatry and Neurology
    Locations
    • Boston: Neurofibromatosis Clinic
    • Boston: Pediatric Neuromuscular Clinic
  • Levitsky, Lynne L., MD

    617-726-2909

    Accepting New Patients

    Clinical Interests
    • Diabetes mellitus
    • Pediatric endocrinology
    • Hypoglycemia
    • Diabetes mellitus type 1
    • Diabetes mellitus type 2
    • Neuroendocrinology
    • Cushing's disease
    Board Certifications
    • Pediatrics, American Board of Pediatrics
    • Pediatric Endocrinology, American Board of Pediatrics
    Locations
    • Boston: Pediatric Endocrine Associates
  • O'Malley, Patricia Jean, MD

    617-643-9079

    Accepting New Patients

    Clinical Interests
    • Palliative care
    Board Certifications
    • Pediatrics, American Board of Pediatrics
    • Pediatric Emergency Medicine, American Board of Emergency Medicine
    • Hospice and Palliative Medicine, American Board of Pediatrics
    Locations
    • Boston: Pediatric Palliative Care
  • Rosales, Ana Maria, MD

    617-726-3826

    Accepting New Patients

    Clinical Interests
    • Echocardiography
    • Congenital heart disease
    • Pediatric arrhythmia
    Board Certifications
    • Pediatrics, American Board of Pediatrics
    • Pediatric Cardiology, American Board of Pediatrics
    Locations
    • Boston: Pediatric Cardiology
    • Nashua: MGH Children's Specialties at Southern New Hampshire Med Ctr
  • Swoboda, Kathryn J., MD

    617-726-5732

    Accepting New Patients

    Clinical Interests
    • Neuromuscular problems of infants and children
    • Motor neuron disease
    • Neurogenetic disorders
    • Dystonia
    Board Certifications
    • Clinical Genetics (M.D.), American Board of Medical Genetics
    • Neurology, American Board of Psychiatry and Neurology
    Locations
    • Boston: Neurogenetics Program
    • Boston: Pediatric Neurology
    • Boston: Pediatric Neurology

Other Providers

  • Catherine Becker, NP
  • James Krupa

Conditions & Diseases

  • Duchenne Muscular Dystrophy

    Duchenne muscular dystrophy (DMD) is the most common and severe progressive muscular dystrophy to affect children.

News

  • Marked on the map - 1/9/2015, Mass General

    The MGH Pediatric Neuromuscular Clinic recently was named a Certified Duchenne Care Center by Parent Project Muscular Dystrophy

  • Neuroscience Center Innovates, Grows - 4/25/2012, Mass General

    The Neuroscience Center at MassGeneral Hospital for Children is a growing program designed to accelerate research and provide state-of-the-art care for children with neurological disorders.

Contact

Contact Us

MGHfC Pediatric Neuromuscular Service

  • Near Public Transit
  • Accessible
  • Phone: 617-643-4645
  • Fax: 978-882-6989

To schedule an appointment with a MassGeneral for Children pediatric specialist, please call 888-644-3248 or complete our online appointment form to request an appointment.

Physicians may call 888-644-3211 or use the online referral form and the Access & New Appointment Center will call your patient within 1 business day.

Contact the Pediatric Neuromuscular Service: 617-643-4645

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