Currently there is no cure for Rett syndrome. Treatment is directed towards improving function and addressing symptoms throughout life. A multi-disciplinary team approach is typically used to treat the person throughout life. This team may include primary care physician, physical therapist, occupational therapist, speech-language pathologist, nutritionist, and support services in academic and occupational settings.
Treatment of Rett syndrome includes: Because of the increased risk of sudden cardiac death, when long QT syndrome is found on an annual screening EKG it is treated with an anti-arrhythmic such as a beta-blocker. There is some evidence that phenytoin may be more effective than a beta-blocker.
Occupational therapy
The symptoms of RTT severely limit individuals from independently taking part in meaningful activities in their day-to-day lives. As a result, most people with this disorder are very dependent on their caregivers in most areas of their lives. Occupational therapists (OTs) try to find ways to encourage these individuals to take part in activities that are meaningful to them, as this has been shown to improve health and well being. The goals of occupational therapy interventions are to maintain or improve the functional abilities of individuals with this disorder. It is important to remember that services for each individual with RTT can differ greatly. OTs work together with clients and their families to help clients achieve their unique goals. OTs not only provide direct services for the client and families, but they can also connect family members to information and resources outside of occupational therapy. Services provided may include but are not limited to: maintaining motor and daily living skills and maintaining cognitive and communication functioning.
Physical therapy
Goals of physical therapy treatment include improving and maintaining function by addressing impairments in mobility, posture, cardiovascular endurance, coordination, and balance. A physical therapist can also fit braces, casts, and assistive devices as necessary to those with Rett syndrome to address bony malformations, and stabilize joints.
Hydrotherapy
Hydrotherapy is an alternative is a branch of both physiotherapy and occupational therapy. There is some evidence to suggest that hydrotherapy can improve movements, feeding skills, motor skills and walking balance in children with Rett syndrome.
Self-care
Some symptoms such as involuntary stereotypical hand movements can make eating a very difficult self-care task for individuals with RTT. One way OTs address this problem is by educating and encouraging caregivers to practice guided feeding. Guided feeding involves having the individual with RTT grasp the spoon, with the caregiver's hand on top of the child's to guide eating movements. The purpose of this therapy is to encourage involvement in this important self-care activity, particularly for individuals with severe cases of RTT. Signals such as opening their mouth in preparation for food, rejecting unwanted foods, and spending an increased amount of time watching their helpers, indicates that guided feeding therapy can increase engagement in eating in some cases.
Another way OTs may increase involvement in eating and hand function in general is by making hand splints. Research suggests that hand splints place the hand in a more functional position and prevent repetitive motion; this leads to better finger and spoon-feeding skills. Although fully independent feeding is rare for individuals with RTT, hand splints allow them to become more engaged in eating. Alternatively, active participation can be encouraged through the use of elbow splints, which decrease the repetitive stereotyped arm movements characteristic of RTT. As a result, socialization and interaction with the environment during eating may increase.
