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How do I manage my child's Rett syndrome on a daily basis?

Rett syndrome affects motor skills, so the child has a limited ability or even a complete inability to eat, walk, bathe, dress, or use the bathroom by themselves. A person with Rett syndrome requires nearly constant care. Many times, this care is provided by parents in the home with occasional outside help from extended family members or health care providers. It may be necessary for your child to participate in physical and speech therapy to help them adapt to the limits placed on them by the disorder. The continual nature of this type of care can be trying for a family. Connecting with other families in the same situation, getting help from outside sources, and utilizing alternative caregivers to get a break from the situation may be helpful ways to cope.

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Important: This content reflects information from various individuals and organizations and may offer alternative or opposing points of view. It should not be used for medical advice, diagnosis or treatment. As always, you should consult with your healthcare provider about your specific health needs.