Babies with Rett syndrome are usually placid and inactive with slow learning. Within a few months of birth, the child's head size may fail to increase at the normal rate indicating that the brain is not growing.
Between 1-3 years:
- the abnormal hand movements which are characteristic of the condition appear, such as complex finger movements, with twisting and squeezing of the hands
- this is usually associated with loss of hand skills, speech, and early motor skills
- the child may be agitated and distressed and breathing may become irregular
- there may be short non-epileptic 'vacant' spells.
The early agitation usually settles after a year or two.
- affected children usually have problems with poorly regulated muscle tension. Some girls do not achieve walking, and those that do walk tend to have a broad-based gait.
- there is a tendency to develop scoliosis
- other problems include feeding difficulties, periodic agitation and breathing problems
- most girls are non-verbal
- epilepsy may occur, usually between 5-10 years.
Despite these symptoms, many individuals with Rett syndrome continue to live well into middle age and beyond. They enjoy social contact, and seem to be particularly responsive to music.