Occupational Therapy for Rett Syndrome

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Rett syndrome is a condition caused by a genetic mutation. It is characterized by normal early development followed by a regression of skills, including motor, social and communication skills. A cure or treatment for Retts is currently not available however; a number of interventions can help. Occupational Therapy for Rett syndrome can help a child be more comfortable, and functional, as well as potentially help prolong the life of a child with Retts.

Stage 1: Early Onset

This stage is usually seen between 6 and 18 months .It is a stage where the child may not achieve new milestones. An occupational therapist, at this stage may help in promoting development. The OT may focus on the hand skills of the child and suggest various activities to help the child use her hands for a variety of tasks.

Stage 2: Rapid Destructive Stage

In this stage, the child with Rett syndrome starts losing skills including motor, language and communication. The occupational therapist at this stage focuses on maintaining the level of function. The occupational therapist may engage the child in a variety of play based activities that require the child to perform and practice motor, social and communication skills. Occupational therapy for Rett syndrome will also focus on helping the child learn and perform daily living skills independently.

Sensory Integration will be another area of focus. Children with Retts are said to have difficulties in sensory processing. Sensory integration therapy will help the normal development of sensory systems, and also decrease a lot of self stimulatory behaviors

Stage 3: Plataeu Stage

In this stage the occupational therapist will motivate the child to continue using and practicing their physical skills. The therapist may provide interesting activities for the child to participate in. A lot of the activities are sensory in nature. Occupational therapy will also aim to ensure that the child is well positioned throughout the day. This is important so that the child does not develop contractures and deformities. The occupational therapist will also suggest a number of modified ways to do daily living activities that will make it easier for the caregivers to care for the child. Home modifications, too may be suggested for the same purpose. Children who have difficulty with feeding, may be given special equipment, or suggested techniques to help facilitate feeding.

By this time, the child may have lost all verbal communication. The occupational therapist can help with integrating the use of a mode of communication, like PECS or computer software into the child’s daily life.

Stage 4: Late Motor Deterioration

This is the final stage of Retts, where the symptoms plateau and stay at the same level for many years. However, many adults with Retts may have severe motor difficulties, and may need assistance for all their tasks. An occupational therapist can help suggest adaptive aids that can make it easier for the caregivers to assist the patient. Sensory stimulation is said to benefit people with Retts and similar conditions to be more alert and respond to the environment around them. The occupational therapist may suggest various functional activities that will give the right amount of sensory stimulation to adults with Retts throughout the day.

People with Retts have been taught to communicate through computers which require simple movements. A lot of researchers believe that people with Retts are aware of the environment and people around them, and can socially respond and communicate through their eyes. An occupational therapist can explore the possibility of such interventions, and help integrate it functionally into the life of a person with Retts.

Thus, these are the Occupational Therapy interventions that can be done for a person with Rett syndrome. As there is little research done on Rett syndrome, the effectiveness of these interventions for Retts have not been researched and documented. However, existing studies indicate that all these interventions will be effective in improving the quality of life of people with Rett syndrome and their families.

A, Scruggs. Rett Syndrome: Characteristics, Causes, and Treatment. Retrieved from https://www.lynchburg.edu/Documents/GraduateStudies/Journal/ScruggsA.doc

Sarojini Budden, M. M. (1990). Communication and Oral Motor Function in Rett Syndrome. Developmental Medicine and Child Neurology , 51-55.

Sigafoos, J. (2009). Communication intervention in Rett syndrome: A Review. Research in Autism Spectrum Disorders , 304–318.

Rett Syndrome Fact Sheet, 2009, National Institute of Neurological Disorders and Stroke, Available here

This post is part of the series: A Guide to Rett Syndrome

In this guide to Rett syndrome, Bright Hub has compiled a series of articles detailing the symptoms and causes of Rett’s syndrome, along with strategies for adults and children living with it.

  1. 7 Interesting Facts about Rett Syndrome
  2. What is Rett Syndrome?
  3. Helping Children with Rett Syndrome
  4. Occupational Therapy Interventions for Rett Syndrome
  5. What is the Prognosis for People with Rett Syndrome?