Rett Syndrome Physical Therapy: Introduction
This article elaborates on the role of physical therapy in the four stages of Rett syndrome and how it can help a child with Retts to retain functional skills for a longer period of time, and prevent the formation of contractures that cause further disability and pain.
Stage I - Developmental Arrest
This stage is seen between 6 and 18 months of age and it is where the child begins to display developmental delay in some physical and visual skills. In many cases the child may not even be diagnosed with Retts during this stage.
Physical therapy here provides activities that encourage physical skill development. The therapist will usually do this through play and other fun activities for the child.
Stage 2- Rapid Deterioration or Regression
This stage lasts between ages one and four and it’s where hand skills and verbal skills may be lost completely. Further regression of motor skills is also noticed. Autistic-like behaviors such as hand wringing can be seen and breathing difficulties may start.
This type of Rett syndrome physical therapy will aim at maintaining the functional skills of the child and the therapist will try to get their patient to walk as much as possible to retain this skill for a longer period of time. Breathing exercises may also be taught and the family will be shown how they can get their child to perform them several times a day if necessary.
Hydrotherapy is another type of physical therapy that can benefit children with Rett syndrome.
Stage 3- Pseudostationary
This stage is seen in children between 2 and 10 years of age. The child may have difficulty with physical movements, stereotypical behavior, and breathing difficulties. Postural deformities may also develop.
Here Rett syndrome physical therapy also aims to maintain the physical and functional skills of the child for as long as possible. The physical therapist may suggest some special chairs or beds for sitting and resting in a comfortable position. Maintaining good posture throughout will help prevent postural deformities like scoliosis. The therapist may also do some range of motion exercises with the child to prevent the formation of contractures in the joints that further restrict movements. Breathing exercises will be continued.
Stage 4- Late motor deterioration
This stage is seen after 10 years of age or so and lasts throughout life. The person with Rett syndrome may have lost ambulation and may be confined to a wheelchair. They may also have movement disorders like involuntary movements or rigidity. Seizures can also occur at this stage. However, the person with Retts may be able to use eye contact to communicate. Breathing difficulties continue, and pneumonias can be a cause of death.
In this stage, physical therapy aims to provide support and make it easier for the patient as well as the caregiver. It will involve range of motion exercises to prevent contractures and lifting and transferring techniques for caregivers. The physical therapist may suggest a special wheelchair that is able to help the client maintain good posture.
Rett syndrome physical therapy can help to make life easier and more comfortable for the person with Retts and their caregivers.
Rett Syndrome: Emedicine.com, https://emedicine.medscape.com/article/916377-overview
What are the Stages of Rett Syndrome? - My Child without limits.org, https://www.mychildwithoutlimits.org/?page=stages-of-rett-syndrome
Can Rett Syndrome Be Treated? - My Child without limits.org,https://www.mychildwithoutlimits.org/?page=rett-syndrome-treatment
April Scruggs, Lynchburg College, Rett Syndrome: Characteristics, Causes, and Treatment - Available at:https://www.lynchburg.edu/Documents/GraduateStudies/Journal/ScruggsA.doc
In addition to these references, the writer has used her own experience as an occupational therapist to write this article.