Possible issues
Girls who have Rett/Rett variant or MECP2 related disorders may have:
- Abnormal muscle tone
- Motor milestones that may be delayed include:
- Sitting and crawling
- Walking
- Some have ataxia (difficulty coordinating small motor movement) gait
- Low muscle tone can lead to abnormal increase in muscle tone, muscle stiffness (75%)
- Often more pronounced in legs and may lead to mild contractures over time
- Motor milestones that may be delayed include:
- Disturbances in blood flow, especially in lower limbs
- Intense eye communication or use eye pointing as part of their communication
- Music therapy, therapeutic horseback riding, swimming have been reported to be of benefit
- Cognitive challenges of varying degrees, with or without seizures
- Very delayed speech development; majority of children do not develop speech
Environment
Consider what affects the environment may have on the child and what offers most comfort.
- Lighting
- Noise level
- Position
- What stresses her
- Address issues such as when the child is flooded with sensory overload, is fatigued, or has anxiety
Eye gaze devices
- My Tobii might offer technology to assist