What Is Muscular Dystrophy and How Will It Affect My Child?

Muscular dystrophy is the name given to a group of rare, genetic (inherited) disorders that cause muscle weakness. Over time, a person’s muscles can be so severely affected that they may lose the ability to walk or carry out daily activities. Some types of muscular dystrophy can affect adults, but the most common types, Duchenne muscular dystrophy and Becker muscular dystrophy, occur in children. 

What Causes Muscular Dystrophy?

Muscular dystrophy is caused by a genetic mutation (an abnormal change of a specific gene) that is inherited by one or both parents. The mutation associated with muscular dystrophy prevents the affected gene from producing a protein that’s essential for the growth and overall health of the muscles. Without this protein, the muscles being to break down and weaken.

What Are the Symptoms of Muscular Dystrophy?

The most common signs of muscular dystrophy in children include:

  • Tripping and falling frequently 
  • Muscle stiffness
  • Delayed growth 
  • Walking on the toes 
  • Gower’s sign (difficulty getting up or using the hands to get up from a sitting or squatting position)
  • Weakness of the arms and/or shoulders
  • Gait problems due to weakness in the hip and thigh muscles

How Does Muscular Dystrophy Affect a Child’s Development? 

Children affected by muscular dystrophy tend to experience physical developmental delays; this can include delays in early developmental milestones, such as walking or jumping. In some cases, muscular dystrophy may affect brain development.

According to the Mayo Clinic, some of the hallmarks of the disease that children may experience are: 

  • Delayed growth
  • Trouble walking
  • Trouble using their arms 
  • Shortening of muscles or tendons, especially those located around the joints 
  • Breathing issues
  • Scoliosis (curved spine)
  • Heart issues 
  • Trouble swallowing

How Is Muscular Dystrophy Treated?

Currently, there is no cure for muscular dystrophy. The main goals of treatment for muscular dystrophy are to manage symptoms and slow the progression of the disease. Muscular dystrophy is generally treated with:

  • Medication
  • Physical therapy
  • Occupational therapy
  • Nutritional counseling
  • Surgery to correct complications of muscular dystrophy, like scoliosis

Some children may depend on walking aids, such as a walker, braces, or a wheelchair. In severe cases, a child may need breathing support. 

Each case of muscular dystrophy is unique and therefore treatment can vary from patient to patient. Treatment plans are determined by the child’s team of doctors based on the:

  • Age of onset of the disease
  • Severity of symptoms
  • Any other existing conditions

Because muscular dystrophy is a progressive disease, families of children who have been diagnosed with the condition are strongly encouraged to constantly monitor the child’s health and treatment options. Families should have regularly scheduled appointments with their child’s specialists and primary care physicians to closely monitor symptoms and to help identify any new symptoms.

At-Home Care for Children with Muscular Dystrophy

Because muscular dystrophy can affect a child’s ability to walk or even eat, taking care of a child with this condition can be highly taxing on caregivers. If you are caring for a child with muscular dystrophy, consider hiring a licensed in-home nurse. 

At JSP Home Care services, our compassionate and licensed nurses can help you create a safe environment for your child and provide care that is tailored to the needs of your child, according to their muscular dystrophy care team. For more information on in-home nursing services for your child, contact us online or call us at 866.860.2528.


Sources: 

https://www.cdc.gov/ncbddd/musculardystrophy/facts.html
https://childrensnational.org/visit/conditions-and-treatments/movement-disorders/muscular-dystrophies
https://kidshealth.org/en/parents/muscular-dystrophy.html
https://www.mayoclinic.org/diseases-conditions/muscular-dystrophy/symptoms-causes/syc-20375388
https://www.verywellhealth.com/caregiving-in-muscular-dystrophy-4155125
https://www.genome.gov/genetics-glossary/Mutation
https://www.cedars-sinai.org/health-library/diseases-and-conditions—pediatrics/d/duchenne-muscular-dystrophy.html
https://www.cdc.gov/ncbddd/musculardystrophy/features/tool-parents-learn-physical-development-delays.html