Muscular dystrophy is a group of conditions that cause muscles to become weaker over time. It most often begins in childhood, sometimes before age 5, and can affect the muscles used for walking, moving and everyday activities. There are several different types of muscular dystrophy, and each child’s symptoms and care plan may look a little different.
Muscular Dystrophy
Our team at the Neurosciences Center is here to provide expert care for your child with muscular dystrophy. We are here to answer all your questions and support your family along the way. Each child's treatment plan is highly customized to ensure your child always receives the very best care.
What Is Muscular Dystrophy?
Types of Muscular Dystrophy
Duchenne Muscular Dystrophy (DMD): This is the most common form of muscular dystrophy. Children with DMD find it very hard to get up from a sitting or lying position on the floor. They first pull up to their hands and knees. Then they walk their hands up their legs to brace themselves as they rise to a standing position.
Becker Muscular Dystrophy (BMD): BMD is a variation of DMD. In BMD, muscles typically function better than they do in DMD, due to a small level of dystrophin being produced.
There are also several other types of muscular dystrophy, such as limb-girdle, congenital and facioscapulohumeral muscular dystrophy. Each type affects muscles differently and care plans are personalized to meet the unique needs of every child and family.
Muscular Dystrophy Treatments We Offer
At Children’s Wisconsin, our team provides personalized, state-of-the-art care for children with muscular dystrophy. Treatment plans are tailored to each child and may depend on factors such as:
- Your child's age, overall health and medical history
- The specific type and severity of muscular dystrophy
- Your child's tolerance for certain medications, procedures or therapies
- Expectation for how the condition may progress
- Your family's goals and preferences
While there is currently no cure for Duchenne, Becker, or other forms of muscular dystrophy, treatment options have expanded rapidly in recent years. Our center is a Muscular Dystrophy Association Certified Care center and offers advanced therapies to help slow disease progression, protect muscle and heart function, and improve quality of life. These may include:
- Infusion therapies and antisense oligonucleotide treatments designed to target specific genetic mutations
- Gene replacement therapies for certain forms of muscular dystrophy
- Steroid treatments, which remain an important tool to help preserve strength and delay complications
- Access to cutting-edge clinical trials through out partnership with national research networks
In addition, our team works closely with families to provide comprehensive support, including physical therapy, respiratory care, nutritional guidance, and resources from organizations such as the Muscular Dystrophy Association (MDA).
Why Choose Children’s Wisconsin for Muscular Dystrophy Care?
Expert care: At Children’s Wisconsin, we provide comprehensive, family-centered care for children with all types of muscular dystrophy. Our MDA Certified Care Center designation recognizes our team’s expertise in delivering the highest standards of diagnosis, treatment, and support for children and families affected by neuromuscular conditions.
A team dedicated to your child: Our care team includes specialists in neuromuscular medicine, cardiology, pulmonology, physical therapy, rehabilitation, nutrition, and genetics, all working together to create a treatment plan that meets your child’s unique needs. We focus not only on medical care but also on supporting your child’s quality of life and independence.
Access to advanced therapies: Children’s Wisconsin offers the most up-to-date treatment options for muscular dystrophy, including:
- Infusion therapies and antisense oligonucleotide treatments
- Gene replacement therapies for certain muscular dystrophy types
- Steroid management to help preserve muscle strength and function
- Cutting-edge clinical trails, bringing families access to the newest treatments before they are widely available
High national rankings: The Neurosciences Center at Children's Wisconsin ranks among the nation’s best by U.S. News & World Report. Our neuroimaging program has been designated a Diagnostic Imaging Center of Excellence by the American College of Radiology, making it the third pediatric hospital in the United States to earn the award.
Comprehensive family support: In addition to advanced medical care, we connect families with important resources, including the Muscular Dystrophy Association (MDA), counseling services, and community programs to support your child’s growth, learning, and social development.
What To Expect
The diagnosis of muscular dystrophy is made with a physical examination and diagnostic testing by your child's physician. During the examination, your child's physician will get a complete prenatal and birth history of your child and ask if other family members are known to have muscular dystrophy. Often, we are able to diagnose children with blood tests, including a genetic test to confirm the diagnosis.
Diagnostic tests for muscular dystrophy may include:
- Blood tests
- Muscle biopsy: The primary test used to confirm diagnosis. A small sample of muscle tissue is taken and examined under a microscope.
- Electromyogram (EMG): A test to check if the muscle weakness is a result of destruction of muscle tissue rather than nerve damage.
- Electrocardiogram (ECG or EKG): A test that records the electrical activity of the heart, shows abnormal rhythms (arrhythmias or dysrhythmias) and detects heart muscle damage.
Our Doctors
At Children's Wisconsin, our doctors are 100% committed to the health and well-being of kids. They care for every aspect of a child's health, including their physical, social, dental and mental well-being. We are a community of dedicated professionals who shares an unwavering passion to care for kids whenever and wherever they need us.
