What Treatment is Available for Rett Syndrome?
As there is no cure for Rett syndrome, treatment focuses on the management of symptoms which requires a multidisciplinary approach. Medication may be required for breathing and motor difficulties, and anticonvulsant drugs may also be required to manage seizures. Occupational therapists are often involved in helping the individual develop skills needed to complete self-directed activities such as dressing and feeding themselves. Dieticians are involved in developing a nutritional program to help the individual maintain adequate weight. Physical therapists are involved to help improve their mobility or prolong/maintain their current mobility. Some individuals may be fitted with special equipment and aids such as braces to manage scoliosis and splints to modify hand movements.
How can a Speech Pathologist help?
As the individual experiences loss of muscle tone they often have difficulty feeding and speaking. A speech therapist is often required to assess and manage the individuals. As the syndrome progresses, the child loses purposeful use of their hands making it difficult to use sign language and the ability to coordinate speech muscles to produce verbal speech. This is known as Apraxia which is often one of the most disabling features surrounding communication. Apraxia therapy is often a slow process however there are a number of successful speech programs such as PROMPT to improve oral speech. For individuals that are not able to communicate verbally, other methods of communication are implemented such as communication boards or key word sign.
Children with Rett syndrome also often exhibit behaviours similar to individuals with Autism such as diminished eye contact, decreased interest in interacting with others and diminished social skills. These skills are often directly targeted in Speech therapy to help improve their social communication depending on the varying difficulties the individual presents with.
Are children with Rett Syndrome eligible to receive Government funding for therapy?
Children who have been diagnosed with of a range of disorders, including Rett Syndrome, may be eligible to receive funding for therapy and resources until your child turns 7. The Better Start for Children with Disability initiative includes up to $12,000 in funding for early intervention services and treatments for eligible children. Additional assistance is also available for eligible children who live in outer-regional, rural or remote locations to help with the costs of accessing services. A Medicare rebate is also available for eligible children up to the age of 13.
If you have questions about speech therapy for children with Rett Syndrome, contact your local doctor who will arrange for you to see a speech pathologist.
For more information
