CHARGE Syndrome and Comorbid Feeding Difficulties: A Summary of Outcomes following Behavior Analytic Treatment
Behavior-analytic feeding plans help kids with CHARGE syndrome eat by mouth and need their tubes less.
01Research in Context
What this study did
Smith et al. (2022) looked at four kids with CHARGE syndrome who also had feeding problems. The team ran an intensive behavior-analytic feeding program for each child. They tracked tube use, mealtime behavior, and feeding goals every day.
What they found
All four children met their feeding goals and cut their tube use. Bad mealtime behavior dropped during the program. Parents kept the gains after the team went home.
How this fits with other research
Delgado-Lobete et al. (2020) used the same intensive style with kids who had autism or other medical issues. Both studies show the method works across diagnoses.
Szempruch et al. (1993) ran a short group program for kids with cystic fibrosis. Their calorie gains lasted two years. Smith’s new cases add CHARGE to the list of medical groups that respond to behavioral feeding help.
Bush et al. (2021) reviewed many behavior-analytic studies for young kids with intellectual disability. Feeding work was not the focus, but the review backs the idea that ABA works for this age and ability range.
Why it matters
If you serve a child with CHARGE, do not jump straight to long-term tube feeds or only oral-motor therapy. Start a behavior-analytic feeding plan first. Use small bites, praise, and ignore refusal. Track tube use each meal. You may wean the tube faster and save the family months of stress.
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02At a glance
03Original 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.
Behavior Analysis in Practice, 2022 · doi:10.1007/s40617-021-00674-5