CHARGE Syndrome and Comorbid Feeding Difficulties: A Summary of Outcomes following Behavior Analytic Treatment.

Abstract

CHARGE syndrome is a genetic disorder caused by mutation of the CHD7 gene. Children with CHARGE syndrome often experience vision and hearing impairments, delayed growth and development, heart abnormalities, and artesia/stenosis of the chonae. Although not part of the diagnostic criteria, many individuals with CHARGE syndrome experience feeding and gastrointestinal difficulties. Interventions most commonly recommended and utilized to address feeding difficulties for children with CHARGE syndrome include tube feedings (medical approach) and oral-motor therapy. Despite the effectiveness of a behavior analytic approach to address feeding difficulties for a variety of pediatric populations, this approach is not routinely considered as a viable treatment option to address feeding difficulties for children with CHARGE syndrome. Outcome data of four children with CHARGE syndrome who participated in an intensive behavioral-based feeding program were reviewed. Variables reviewed included percentage of admission goals achieved, treatment strategies utilized, and changes in growth status, feeding tube dependence, texture and variety of foods consumed, and occurrence of inappropriate mealtime behavior. Outcomes evaluated in this review support the effectiveness of a behavior analytic approach for addressing feeding difficulties for children with CHARGE syndrome.