Expectations (prognosis)
The progression of this disease usually levels off once the patient reaches teenage years. For example, if seizures or breathing abnormalities are present, they tend to lessen in late adolescence.
Each child's developmental regression or delays are different, so it is hard to generalize. Usually, a child with Rett syndrome sits up properly but may not crawl. For those who do crawl, many do so without using their hands (for example, "combat crawling" on the tummy).
Similarly, some children walk independently within the normal age range, while others are delayed, don't learn to walk independently at all, or don't learn to walk until late childhood or early adolescence. For those children who do learn to walk at the normal time, some keep that ability for their lifetime, while other children lose the skill.
Life expectancies are not well studied, although survival at least until the mid-20s is likely. The average life expectancy of a girl with Rett syndrome may be mid-40s. Death is often related to seizure, aspiration pneumonia, malnutrition, and accidents.
Calling your health care provider
Call your health care provider if you have any concerns about your child's development, if you notice a lack of normal development with motor or language skills in a child, or if there are associated disorders that need treatment.
Prevention
The likelihood of having another child with Rett syndrome is less than 1%.
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