Pediatric neuromuscular disorders: Comprehensive care for children and their families

When your child is diagnosed with a neuromuscular disorder, your world can turn upside down. UW Health professionals offer assistance, support and the best medical care available to ease your way.
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Overview

Customized care for all types of neuromuscular disorders

UW Health 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 Pediatric 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.

Condition types

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 may not be able to crawl, walk, sit up or control their head movements. In severe cases, kids may also 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 may appear “floppy” and might 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

Our providers

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 may 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 Pediatric Neuromuscular Disorders Clinic is located in the American Family Children’s Hospital in Madison.

  • American Family Children's Hospital - Pediatric Neuromuscular Disorders Clinic
    • 1675 Highland Ave. / Madison, WI
    • (608) 263-6420
    • Closed now
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      View hours, services and more

Patient support and services

Resources

These resources can help you learn more about neuromuscular disorders and caring for your child: