As one of the most frequently inherited disorders worldwide, muscular dystrophy affects boys almost exclusively. Approximately 1 in 3,500 to 6,000 males born in the United States has Duchenne muscular dystrophy, the most common form of muscular dystrophy in children. Although there are several types of muscular dystrophy, they all involve muscle weakness and a loss of muscle mass. The arms and legs are often impacted first and other muscle groups follow later. Some children with severe forms of the disorder never gain the ability to walk; others lose the ability to do so over time. Although no cure exists, some treatments can help lengthen the time of muscle functioning. As the muscles progressively weaken due to the condition, physical therapy can greatly improve a child’s abilities and quality of life.
All muscular dystrophies stem from a change or mutation in a baby’s genes. Some children develop the condition as a result of inheriting an abnormal gene; others develop it from a spontaneous mutation when the baby is in utero.
Parents often notice muscular dystrophy by observing their three-to-five-year-old child experiencing reoccurring tumbles, frequent toe walking, a slow run, and a waddling gait. Initially, weakness is noticeable in the hips and upper leg muscles, although this will eventually progress to most voluntary muscles. Any delay in gross motor functioning, particularly sitting up, crawling, walking or running, can be cause for concern. Doctors may raise the alarm after a child continually stands up by pushing on his thighs, which is an indication of pelvic muscle weakness. At age 3 1/2, children who must roll onto their stomach in order to move up off the ground should be evaluated.
As the effects of the disorder become more pronounced, the need for physical therapy shifts. At all stages, however, physical therapy plays an important role.
Physical therapy is integral to maintain muscle functioning and avoid joint problems. The goals of such therapy are to help a patient stay as flexible, strong and symmetrical as possible. A physical therapist works with the child to exercise, stretch, and maintain appropriate posture. They assist with hydro-based therapy, and continually observe a child’s spine, respiratory and musculoskeletal function. Physical therapists are also key in prescribing and monitoring adaptive seating and equipment. Many parents rely on the therapists to assist school staff with modifications, advocate for the family, and communicate with the insurance companies. Even when a person is relegated to a wheelchair, physical therapy can help improve a person’s abilities.
Adaptive equipment and devices
Children with muscular dystrophy have an increased risk of falls. Since the condition impacts visual abilities, muscle strength and overall mood, many patients require adaptive equipment to ensure safety and increase functioning. Physical therapists can help recommend and assist children in obtaining powered mobility devices, wheelchairs, canes and walkers. As general functioning declines, an occupational therapist can also guide children and adolescents in the use of long-handled sponges, button hooks, and pen cushions.
Weakness is a natural component to muscular dystrophy. However, it can play a minor role compared to disuse. Physical therapists can help guide patients to the appropriate amount and type of exercise through carefully tailored routines. As muscles atrophy, a skilled physical therapist can provide adjustments to exercises as well. The therapist can recommend games and fun activities that increase strength, lessen the risk of obesity, and improve heart health.
Since muscular dystrophy affects respiratory functioning, physical therapists often lead patients in breathing exercises and activities designed to build respiratory strength.
Physical therapists help children master vital developmental skills, such as crawling, jumping, climbing and eating.
When looking for a physical therapist, it’s important to find someone who has experience in pediatric physical therapy and muscular dystrophy. She should be willing to work with other health care professionals and coordinate care with you, the parent or caregiver.