- Linda Cooper‐Brown 1,2
- Sara Copeland 3,4
- Scott Dailey 5
- Debora Downey 6,7
- Mario Cesar Petersen 8
- Cheryl Stimson 3
- Don C. Van Dyke 3,9,10,11
- Division of Pediatric Psychology, The University of Iowa Children's Hospital, Iowa City, Iowa
- Correspondence address: Division of Pediatric Psychology, University of Iowa Children's Hospital, 140‐B, Center for Disabilities and Development, 100 Hawkin's Drive, Iowa city, IA 52242‐1001
- Division of Medical Genetics, The University of Iowa Children's Hospital, Iowa City, Iowa
- Newborn Metabolic Screening Program, The University of Iowa, Iowa City, Iowa
- Department of Head and Neck and Otorhinolaryngology, The University of Iowa Hospitals and Clinics, Iowa City, Iowa
- Department of Communication Sciences and Disorders, Wendell Johnson Speech and Hearing Center, The University of Iowa, Iowa City, Iowa
- The Center for Disabilities and Development, The University of Iowa, Iowa City, Iowa
- Child Development and Rehabilitation Center, Oregon Health Science University, Eugene, Oregon
- Division of Developmental and Behavioral Medicine, The University of Iowa Children's Hospital, Iowa City, Iowa
- Department of Epidemiology, College of Public Health, University of Iowa, Iowa City, Iowa
- Child Health Specialty Clinics, Iowa City, Iowa
Children with genetic syndromes frequently have feeding problems and swallowing dysfunction as a result of the complex interactions between anatomical, medical, physiological, and behavioral factors. Feeding problems associated with genetic disorders may also cause feeding to be unpleasant, negative, or even painful because of choking, coughing, gagging, fatigue, or emesis, resulting in the child to stop eating and to develop behaviors that make it difficult, if not impossible, for a parent to feed their child. In addition, limited experiences with oral intake related to the medical or physical conditions, or other variables such as prematurity, often result in a failure of the child's oral motor skills to develop normally. For example, a child with Pierre Robin sequence may be unable to successfully feed orally, initially, due to micrognathia and glossoptosis. Oral‐motor dysfunction may develop as a result of both anatomical problems, (e.g., cleft lip/palate), lack of experience (e.g., s/p. surgery), or oral motor abnormalities (e.g., brain malformation). Neuromotor coordination impairments such as those associated with Down syndrome (e.g., hypotonia, poor tongue control, and open mouth posture) frequently interfere with the acquisition of effective oral‐motor skills and lead to feeding difficulties. Management of these phenomena is frequently possible, if an appropriate feeding plan exist that allows for three primary factors: (1) feeding program must be safe, (2) feeding program must support optimal growth, and (3) feeding program must be realistic. Researchers have demonstrated the utility of behavioral approaches in the treatment of feeding disorders, such as manipulations in the presentation of foods and drink and consequences for food refusal and acceptance (e.g., praise, extinction, contingent access to preferred foods). However, because a child's failure to eat is not frequently the result of a single cause, evaluation and treatment are typically conducted by an interdisciplinary team usually consisting of a behavioral psychologist, pediatric gastroenterologist, speech pathologist, nutrition, and sometimes other disciplines. This chapter provides an overview of some of the feeding difficulties experience by some of the more common genetic disorders including identification, interventions, and management. © 2008 Wiley‐Liss, Inc. Dev Disabil Res Rev 2008;14:147–157.
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