Abstract
Children with cognitive and adaptive disabilities are at increased risk for developing feeding difficulties and secondary nutritional deficiencies. Problems such as poor oral-motor coordination, swallowing dysfunction, gastroesophageal reflux, and aversive feeding behaviors comprise significant obstacles to growth, prevent the achievement of developmental potential, and threaten clinical stability. Feeding and nutritional problems in patients with developmental disabilities have been well documented, and malnutrition has been reported in up to 90% of nonambulatory children with cerebral palsy. Although diverse factors certainly contribute to this startling and disturbing observation, feeding disorders have been observed in a high percentage of children with major motor and cognitive disabilities. Failure to assess and treat these problems in a timely fashion not only hastens the onset of significant nutrient deficits, but also heightens the incidence of complications, increases hospitalization rates, and results in impaired quality of life. This article describes an approach to evaluating and managing feeding disorders in children with developmental disabilities; and it examines effects of these management strategies on growth and clinical outcomes. The importance of a structured approach to these problems is discussed, and a diagnostic and treatment algorithm for addressing common feeding disorders is presented. Utilizing this approach in a group of 79 children with moderate-severe neurodevelopmental disabilities, 2-year follow-up data demonstrate that diagnosis-specific interventions significantly improve nutritional status and reduce clinical morbidity in these patients.
FEEDING DISORDERS represent major clinical problems that complicate the management of infants and children with neurodevelopmental disabilities. If left untreated, oral-motor, swallowing, and gastroesophageal function abnormalities lead to cachexia and poor growth, hinder developmental performance, and increase medical and behavioral morbidity (Dahl, Thommessen, Rasmussen, & Selberg, 1996; Gisel, Birnbaum, & Schwartz, 1998; Reilly, Skuse, & Poblete, 1996; Stallings et al., 1996). In the daily care of children with disabilities, parents and caregivers report difficult and prolonged feeding times that result in frustration and anger and often prevent the implementation of vital activities essential to the optimal management of developmental challenges (eg, physical and occupational therapy, community programs, and recreational activities).
A review of available studies shows that 30% to 90% of individuals with major motor and/or cognitive disabilities exhibit feeding difficulties, and evidence of malnutrition has been reported in up to 90% of nonambulatory children with cerebral palsy (Rempel, Colwell, & Nelson, 1988). The most commonly identified feeding problems include gastroesophageal reflux (GER), oral-motor dysphagia, swallowing disorders, and aversive feeding behaviors (Burklow et al., 1998; Rempel et al., 1988; Rogers, Arvedson, et al., 1994; Sullivan et al., 2000; Waterman, Koltai, Downey, & Cacace, 1992). Complications associated with these conditions increase acute care hospitalization rates, heighten costs of care, and impair quality of life (Morton, Wheatley, & Minford, 1999; Toder, 2000). Several large-scale population studies have reviewed the importance of feeding disorders in children with disabilities. Data from nearly 14,000 births enrolled in the Avon (UK) Longitudinal Study of Parents and Children indicate that feeding difficulties during the first 4 weeks of life, in children with cerebral palsy, are highly predictive for subsequent swallowing problems and malnutrition (Motion et al., 2002). Information from the Oxford (UK) Register of Early Childhood Impairments demonstrates that children with moderate to severe neurodevelopmental disabilities commonly exhibit feeding problems (Sullivan et al., 2000). Persistent vomiting was described in 22%, choking with feeds occurred in 56%, and prolonged feeding times were reported in 28% of developmentally impaired children. Not surprisingly, parents and other caregivers described mealtimes with terms such as stressful and unenjoyable.