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Journal of Pediatric Gastroenterology & Nutrition:
doi: 10.1097/MPG.0b013e31829e0b65
Original Articles: Hepatology and Nutrition

Assessment and Management of Nutrition and Growth in Rett Syndrome

Leonard, Helen*; Ravikumara, Madhur; Baikie, Gordon; Naseem, Nusrat*; Ellaway, Carolyn§; Percy, Alan||; Abraham, Suzanne; Geerts, Suzanne||; Lane, Jane||; Jones, Mary#; Bathgate, Katherine*; Downs, Jenny*

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Objectives: We developed recommendations for the clinical management of poor growth and weight gain in Rett syndrome through evidence review and the consensus of an expert panel of clinicians.

Methods: Initial draft recommendations were created based upon literature review and 34 open-ended questions in which the literature was lacking. Statements and questions were made available to an international, multidisciplinary panel of clinicians in an online format and a Microsoft Word–formatted version of the draft via e-mail. Input was sought using a 2-stage modified Delphi process to reach consensus. Items included clinical assessment of growth, anthropometry, feeding difficulties and management to increase energy intake, decrease feeding difficulties, and consideration of gastrostomy.

Results: Agreement was achieved on 101 of 112 statements. A comprehensive approach to the management of poor growth in Rett syndrome is recommended that takes into account factors such as feeding difficulties and nutritional needs. A body mass index of approximately the 25th centile can be considered as a reasonable target in clinical practice. Gastrostomy is indicated for extremely poor growth, if there is risk of aspiration and if feeding times are prolonged.

Conclusions: These evidence- and consensus-based recommendations have the potential to improve care of nutrition and growth in a rare condition and stimulate research to improve the present limited evidence base.

© 2013 by European Society for Pediatric Gastroenterology, Hepatology, and Nutrition and North American Society for Pediatric Gastroenterology,


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