Exercise can improve coordination and movement in patients with Rett syndrome. In consultation with a clinician and a patient’s caregivers, a physical therapist can design an exercise program that can help a patient perform daily activities more independently, as well as reduce stress and seizures.

Goals of exercise

Rett syndrome is an X-linked neurodevelopmental disorder characterized by impaired brain development. The symptoms of the disease tend to worsen with age.

Exercise can help build muscle strength and prevent the worsening of symptoms in Rett syndrome patients. The overall goals of exercise for these patients include:

  • Developing motor skills and maintaining existing skills
  • Maintaining muscle tone and promoting the maximum possible range of limb motion
  • Reducing deformities caused by improper posture, balance, or movement, and preventing injuries
  • Decreasing discomfort while performing day-to-day activities
  • Improving mobility and enabling the patient to become more independent

Benefits of exercise

Research has shown that organized physical activity can improve cognitive functioning for patients with neurodevelopmental disorders such as Rett syndrome. An exercise program can also encourage parents and caregivers to help patients engage in more intense forms of physical and social activities.

Exercise for different stages of Rett syndrome

Generally, the first symptoms of Rett syndrome start to appear when the patient is between 6 to 18 months and gradually progress with age. An exercise regimen is customized according to the needs of the child and stage of symptom progression.

In the early stages of the disease (stage 1), exercise therapy focuses on increasing movement and independent standing.

Stage 2 of the disease occurs between ages 1 and 4. This stage presents a challenge to therapists and caregivers because patients lose previously acquired motor functions, and experience abnormal hand movements along with irregular breathing. Gentle handling of patients in this stage reduces the information going from their sense organs to the brain. Studies in girls with Rett syndrome younger than 6 have shown that they improve their motor abilities when their environment promotes sensory, social, and cognitive engagement.

Stage 3, between ages 2 and 10, is a plateau phase where improvements to motor activities can be noticed. Children should continue an exercise regimen in this stage to retain most of the skills learned thus far. At this stage, children commonly show mannerisms, such as putting hands in the mouth, that can interfere with feeding. Depending on the extent of such mannerisms, it may be required to restrain the use of a child’s hands to convey a sense of awareness to that child.

When the disease progresses to stage 4, usually after age 10, the patient has joint stiffness, reduced mobility, and potential scoliosis (an abnormal curvature of the spine). If surgery is required to correct scoliosis, the patient needs physical therapy before and after the procedure. Research has shown that light treadmill exercises help to improve functional skills such as standing, walking in different paths, and going up and down stairs, along with overall physical fitness in girls with Rett syndrome older than age 10.

Other information

Aquatic exercises offer a unique way for children to improve motor skills as water provides a freer environment for movement and helps increase their awareness of the surroundings. Water adaptation should be a gradual process, and the child made to feel safe before starting any aquatic exercises. The therapist should devise exercises that can be performed both on land and in water as it may not be possible to duplicate the skills on land that were learned in the water.

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