My child has Rett syndrome. How will this affect our daily life?
The age when RTT begins and the severity of different symptoms may vary. The child with RTT is usually born healthy and shows an early period of apparently normal or near normal development until 6-18 months of life, when there is a slowing down or stagnation of skills. A period of regression then follows when she loses communication skills and purposeful use of her hands and slowing of the normal rate of head growth become apparent. Soon, stereotyped hand movements and gait disturbances are noted. Other problems may include disorganized breathing patterns which occur when she is awake and seizures. There may be a period of isolation or withdrawal when she is irritable and cries inconsolably. Over time, motor problems may increase, while interaction and communication, especially with eye gaze, seizures, and irregular breathing may improve. Most individuals with RTT require maximum assistance with every aspect of daily living. The very basics of caregiving include what we do every day:
