Purpose of Rett Syndrome Treatment
Rett syndrome is a neurodevelopmental disorder characterized by loss of speech, movement and hand use in children, mostly girls. The purpose of current treatments of Rett syndrome is to improve movement, balance and coordination, communication skills, and the use of hands along with preventing deformities.
It is believed that if given the opportunity, girls affected with this genetic disorder may be able to learn new skills. Some of the treatment methods that can help are listed below:
Medications and Surgery
Medications and surgery cannot cure the disorder. However, anti-seizure drugs such as carbamazepine can help control seizures. L-dopa may help reduce motor rigidity and L-carnitine can bring improvements in hand movements.
Medications may also be prescribed for symptoms such as constipation, irregular heartbeat, or respiratory problems and surgery can help correct severe scoliosis (abnormal curvature of the spine).
Special Equipment and Aids
Some girls with Rett syndrome may benefit from specific equipments and aids. For example, braces and casts can help prevent further deterioration of the curving of the spine or scoliosis. For children who make repetitive movements of hands, such as hand wringing, the use of splints can prevent these movements by restricting the elbow and wrist. Other types of equipment that children with Rett’s may need include a toilet chair, a bath chair, or a wheelchair or stroller to help manage their daily tasks.
Physical, Occupational and Speech Therapy
Physical therapy can help improve or maintain walking abilities as well as maintain balance and flexibility.
An occupational therapist can teach the child how to use their hands to perform various tasks such as dressing and feeding themselves or activities such as painting, drawing and sculpting.
Speech therapy can play an important role in teaching the child non-verbal ways of communicating their needs and desires as well as helping to bring about an improvement in their social interactions.
A high-fat and high-calorie diet is required for children with Rett syndrome. This ensures that they develop normally in weight and height. Normal weight gain may help to improve mental and physical growth, social interaction, and focus. Adequate intake of fluids and a high-fiber diet is also required to prevent constipation.
A child with slowed growth or a child who breathes in their food may benefit from supplementary diet provided through a feeding tube. The tube may be placed in the nose or directly in the stomach.
Alternative Therapies for Rett Syndrome
Although there is no evidence that alternative therapies can be effective in treating Rett syndrome, there are certain approaches that some parents report have helped their child. These include acupuncture, chiropractic, and massage therapy. A particular form of massage therapy called myofascial release may help in loosening stiff muscles and joints.
Therapies that may help improve mobility, flexibility and balance include slow yogic stretching and hydrotherapy (moving in water). Horseback riding may also maintain or improve motor skills of the child.
Music therapy may also improve language as well as motor skills of the child.
National Institute of Neurological Disorders and Stroke: Rett Syndrome Fact Sheet, https://www.ninds.nih.gov/disorders/rett/detail_rett.htm
Mayo Clinic: Rett Syndrome, https://www.mayoclinic.com/health/rett-syndrome/DS00716
National Institute of Child Health and Human Development: Rett Syndrome, https://www.nichd.nih.gov/health/topics/rett_syndrome.cfm
We Move: Treatment of RS, https://www.wemove.org/rett/rett_tre.html
International Rett Syndrome Foundation, https://www.rettsyndrome.org