Caring for a Child With Muscular Dystrophy: What Parents Should Know

Learning that your child has muscular dystrophy can be overwhelming. As a parent, you’re not only processing the weight of a diagnosis but also stepping into the role of your child’s advocate in the healthcare system. Working closely with your child’s care team can help you plan appropriately for their ongoing care, education, and quality of life.

Understanding the Diagnosis

The term muscular dystrophy refers to a group of genetic conditions that causes muscles to get weaker and smaller over time, making it harder for the body to move and stay strong. There are several types of muscular dystrophy; Duchenne is the most common in children. Each type of muscular dystrophy is caused by changes (mutations) in certain genes that help muscles work properly.

Key Questions to Ask Your Child’s Doctor at Diagnosis

• What type of muscular dystrophy does my child have? How does it typically progress?
• What symptoms or signs should we look for?
• How will the condition affect my child’s daily life?
• Will my child need surgery?
• What kinds of non-surgical or supportive therapies are recommended?
• Should we consider seeking care with any other specialists (eg, pulmonologist, cardiologist, sleep specialist)?
• Should we consider genetic counseling for our family?

Seeing the Big Picture of Lifelong Treatment

There is no cure for muscular dystrophy, but the goals of treatment are to help your child stay strong and independent for as long as possible. Your child’s doctor will create a treatment plan based on many factors, including:

• Your child’s age and overall health
• The type and severity of muscular dystrophy
• How your child may handle certain treatments
• Your family’s preferences and goals
• What to expect as the condition progresses

Seeking Supportive Therapies

Your doctor may recommend several non-surgical therapies, such as:

• Physical therapy to improve strength and movement
• Positioning aids to support sitting, lying, or standing
• Braces or splints for posture support and to ease muscle tightness
• Medications to manage symptoms
• Nutrition support for healthy growth and weight management
• Counseling to support your child’s and family’s mental health
• Breathing assistance, especially at night, as respiratory muscles weaken

A multidisciplinary care team can help coordinate these services and monitor your child’s health over time.

Considering Surgery

Surgery may be recommended to manage complications of muscular dystrophy. For example:

• To correct spine curvature (scoliosis) that could make breathing more difficult
• To maintain your child’s ability to sit or stand comfortably
• To implant a pacemaker or cardiac defibrillator to manage abnormal heart rhythm

Every family’s experience with muscular dystrophy is unique, but no parent should have it to go through it alone. As your child’s needs change over time, it’s important to continue asking questions, leaning on your support network, and taking things one step at a time.