Author: Isaacs JS et al
Source: : Journal of the American Dietetic Association. 103(2), 224-230; 2003.
Rett Syndrome is an inherited condition that only affects girls (it is fatal in male fetuses). Typically, development starts out normally, but then begins to regress at about ages 2-3 and significant developmental delays often begin to develop.
In this study, a chart review compared 22 girls with Rett Syndrome with 22 girls who had other developmental disabilities to determine if the girls with Rett Syndrome had nutritional and feeding problems similar to girls with other developmental disabilities. Patient charts were selected based on specific criteria (age, type of feeding, certain developmental disabilities etc), to ensure that the two groups of subjects were as similar as possible. All chart reviews had a nutrition assessment completed with a detailed dietary intake form indicating types of foods eaten, and parent reports of eating abilities and approximate daily intake.
The goal of the study was to identify eating problems in girls with Rett syndrome and compare them to those found in girls with other developmental disabilities. This could show that a detailed nutrition assessment can help identify potential growth and feeding problems before they become a major barrier to eating. From examining the food records, the authors developed a table containing four categories that examined the child?s ability to take in different types of food textures (ex gummy, chewy, brittle) and viscosity (which can determine how well thin vs. thick liquids are tolerated). Growth parameters including weight and head circumference were also evaluated. Height was not used because many of the children had scoliosis (excessive curvature of the spine.)
The results of the study suggested that girls with Rett syndrome had lower weights, more gastrointestinal symptoms, more breathing difficulties that could interfere with eating, and a lower tolerance for chewy and crunchy foods than the girls with other disabilities.
The girls with Rett Syndrome showed less ability to feed themselves than girls with other developmental disabilities. Over half of the girls with Rett syndrome had microcephaly, whereas a smaller percentage of girls with other developmental disabilities exhibited this. (Microcephaly indicates a small brain and may suggest slow brain growth. It is defined by a head circumference measure that is lower than the 2-5% percentile on the growth chart.)
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