Overview
Customized care for all types of neuromuscular disorders
UW Health Kids specialists assess and treat children with many types of neuromuscular disorders. These conditions affect nerves in the body and can cause muscles to weaken and waste away. Many times, neuromuscular disorders are genetic.
Our team of experts works together to care for your child. We tailor our services to each patient, focusing on their physical, emotional and psychological needs. Our goal is to help children live as fully and as well as they can. Through our UW Health Kids Neuromuscular Disorders Clinic, children can receive all services in one place at the same time.
Conditions and disorders
When nerves and muscles malfunction
Neuromuscular disorders affect nerves and muscles and disrupt the communication between the two. We treat many types of these conditions, including:
Muscular dystrophy (MD) refers to a large group of diseases that cause muscle weakness and loss. Some types of MD appear early in life. Others are not diagnosed until later. Symptoms can include stumbling, waddling and trouble climbing stairs. Some children also develop scoliosis, a curvature of the spine.
The most common type of MD is Duchenne muscular dystrophy. UW Health’s American Family Children’s Hospital is one of only a small number of centers in the country named a Certified Duchenne Care Center by Parent Project Muscular Dystrophy. This honor recognizes our commitment to quickly apply new research findings and provide the best care.
A problem with a specific gene causes spinal muscular atrophy (SMA). It can lead to muscle weakness and a decrease in muscle size. Infants with SMA might not be able to crawl, walk, sit up or control their head movements. In severe cases, kids also could have problems breathing and swallowing.
Congenital myopathies refer to muscle conditions that are present at birth or appear early in life. Children with these disorders might appear “floppy” and could have trouble with breathing or feeding.
Meet our team
Experienced specialists focused on your child
Neuromuscular disorders can affect children in many ways. To help us meet all your child’s needs, we use a team approach to care. Pediatric experts in orthopedics, pulmonary medicine and rehabilitation medicine work together to develop your child’s care plan and manage their treatment. They work with other specialists, including:
Cardiologists
Child life specialists
Genetic counselors
Neurologists
Nurses
Occupational therapists
Physical therapists
Registered dietitians
Respiratory therapists
Social workers
Speech therapists
Carrie Barker, MD
Pediatric Pulmonology and Sleep MedicineCameron Crockett, MD
Pediatric NeurologySara Dawkins, PA
Pediatric Orthopedic SurgeryDerek Hoyme, MD
Pediatric Cardiovascular MedicineCarly Johnson, NP
Pediatric Pulmonology and Sleep MedicineAlanna Kessler-Jones, PsyD
Pediatric Neuropsychology
Treatments and research
The right treatment at the right time
In many cases, there is no cure for neuromuscular disease. But we can offer treatments that help children feel and function better. Because every child is different, every child’s treatment could be, too. Often, treatment needs change over time.
The treatments and services we offer include:
Assistive devices, including wheelchairs and robotic technology to help children with movement and daily activities
Breathing support and help with airway clearance
Connection to the Muscular Dystrophy Association
Counseling and support groups
Gene therapy for spinal muscular atrophy (Zolgensma)
Genetic counseling
Inpatient rehabilitation
Medication
Nutritional support
Occupational therapy
Physical therapy
Speech therapy
Splinting and bracing
Surgery to correct scoliosis or improve physical function
Location
Special care for special kids
The UW Health Kids Neuromuscular Disorders Clinic is located in the American Family Children’s Hospital in Madison, Wis.
American Family Children's Hospital Pediatric Neuromuscular Disorders Clinic
Patient support and services
Resources
These resources can help you learn more about neuromuscular disorders and caring for your child: