Observations on hand movements in Rett syndrome: a pilot study

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Abstract
It has been assumed that the stereotyped hand movements in Rett syndrome are symmetrical, midline and that they prevent purposeful use of the hands. Their relationship with respiration has not been previously explored. Twenty-five girls whose Rett syndrome included disorganised breathing were selected. Their parents were contacted and interviewed by telephone at their convenience. None refused. The hand movements were asymmetrical in 44% of girls. Those with mainly unilateral hand movements used the same hand for purposeful tasks. The hand movements appeared to change with changing emotional or mental states. In 72% of girls the intensity of hand movements varied directly or inversely with the respiratory pattern. In almost half of the Rett girls the hand stereotypy is asymmetrical and non-midline. It is not the hand movements which prevent purposeful use of the hands. The hand movements together with the erratic breathing are employed as a useful means of communication.