Supporting Your Child's Function and Quality of Life
The Neuromuscular Disorders Center at NewYork-Presbyterian/Morgan Stanley Children's Hospital provides comprehensive care for children with various types of neuromuscular disorders, including cerebral palsy, spinal muscular atrophy (SMA), muscular dystrophies, and congenital syndromes which affect the musculoskeletal system. Children with neuromuscular problems often experience increased or decreased muscle tone, hip dislocation, clubfoot, scoliosis, or muscle contractures around the body.
We take a proactive yet conservative approach to caring for your child, with the goal of decreasing problems that can result if abnormal muscle tone is not treated. We create a plan of care in a compassionate, family-friendly environment, with the goal of attaining the highest level of independence and function possible for your child.
- All the Specialists Your Child Needs: We have all the experts needed to provide the very best care for your child. Our team includes neurologists, pulmonologists, cardiologists, physiatrists, orthopedists, psychologists, nurses and nurse practitioners, social workers, physical and occupational therapists, and orthotists. Children with neuromuscular disorders often have other related medical problems; NYP/Morgan Stanley Children's has every type of pediatric specialist and subspecialist on staff, all located in one medical center for your convenience. Such multidisciplinary care enables you to minimize trips for your child's medical appointments.
- Comprehensive Care for All Neuromuscular Disorders: We have a dedicated SMA Clinic, supported by the SMA Foundation and providing all the care children with SMA and other neuromuscular disorders may need. Our team also cares for children with diseases of the neuromuscular junction (such as myasthenia gravis); peripheral nerve diseases (such as Charcot-Marie-Tooth disease, Dejerine-Sottas disease, and Friedreich's ataxia; myositis; metabolic diseases, such as those caused by enzyme deficiencies; muscular dystrophy; and hyperthyroid myopathy, hypothyroid myopathy, and other myopathies.
- Nonsurgical Treatments: Botulinum toxin (Botox) is an important option for treating children with neuromuscular disorders without surgery. Our group has a special interest in the use of Botox to improve quality of life and prevent disability. Special bracing is often required to maintain the gains your child makes through physical therapy and/or Botox; we feel fortunate to be associated with a team of pediatric orthotists who have special expertise in this area.
- Specialized Surgery When Needed: When nonsurgical methods are insufficient to manage your child's symptoms, surgery is an option. Our pediatric orthopedic surgeons have exceptional experience performing procedures that improve quality of life and function in children with neuromuscular disorders.
- Family-Centered Care: We developed a Patient and Family SMA Working Group to promote family-centered care and enhance the overall family experience at our clinic. The group has collected resources for families of newly diagnosed patients as well as children living with chronic illnesses. The group diligently worked with staff in our pediatric intensive care unit to improve continuity of care and the overall patient experience, further improving respiratory management, nutritional management, and discharge planning for all children with neuromuscular disorders.
- Leaders in Research: We perform a wide array of clinical research studies examining outcomes, quality of life, and treatment options for children with neuromuscular disorders. For example, our investigators are assessing a new therapy called ISIS-SMNRx that targets the SMN2 (Survival of Motor Neuron) gene in children with SMA. Preliminary results have shown that ISIS-SMNRx can improve function and symptoms in children with SMA.