What To Expect
Even though there is not yet a cure for Rett syndrome, there are interventions that will make a significant difference. As Rett syndrome is not a degenerative disease, constant physical and mental stimulation will have a tangible impact, and it will avoid further physical deterioration due to non use. “Walk, walk, walk,” Dr. Rett used to say. Each intervention will enhance the quality of life for those living with the condition.
Occupational, speech/communication and physical therapies are essential supports. The therapists within these three services often work together to address issues and develop therapy plans. Aggressive therapy is always recommended and there may be a need for lifelong therapy support. A team approach including the family is the best practice when supporting a child or adult with RTT. At this point, led by therapists with expertise in augmentative communication, good results are being seen with the use of computers that respond to eye gaze and do not necessarily require hand skills.
Other effective therapy interventions often used are hydro, hippo, music and massage therapies. They provide support to occupational, physical and speech programs. Each has its benefits and should not be overlooked.
Children and adults with RTT can continue to learn and enjoy family and friends well into middle age and beyond. They experience a full range of emotions and show their engaging personalities as they take part in social, educational and recreational activities at home and in the community.