Dysphagia 16:74 (2001) DOI: 10.1007/s004550000045 © Springer-Verlag New York Inc. 2001

Editorial

Case Management Challenges in Pediatric Dysphagia In their article on foreign body ingestion (FBI) in children [1], Reilly and Carr provide a vivid example of the complex issues encountered in managing pediatric dysphagia in a child with developmental disability (DD). Their case illustrates symptoms and contributing causes that are often seen in children with multiple disabilities and dysphagia. The cluster in this case history consisted of medical and developmental factors: oral structural anomalies, including unrepaired cleft palate; gastroesophageal reflux; difficulties during suckling feeding; difficulties advancing to solid foods; failure to develop chewing and cup feeding skills; and prolonged nasogastric tube feeding. There were also cognitive and motor impairments and, as is often the case in DD, the child was unable to describe his symptoms, thereby further complicating differential diagnosis and management. Before he was referred to the Multidisciplinary Pediatric Dysphagia Team at the age of five, this child’s dysphagia had been managed as part of his overall medical and educational care. The changes in eating behavior associated with FBI precipitated the referral to the team. However, the resulting cascade of interventions addressed issues unrelated to FBI that were associated with the child’s nutritional management problems. Consideration of the issues by the team of dysphagia specialists resulted in different treatment decisions—decisions that would be expected to improve the child’s potential for more favorable long-term nutritional, medical, and developmental outcomes. The team finding of FBI underscores the importance of (a) timely referrals to a multidisciplinary dysphagia team, (b) routine videofluoroscopic examination of oral-pharyngeal swallowing for the child with medical or nutritional complications, and (c) routine videofluoroscopic observation for esophageal disorder. Although screening for esophageal disorder and performing esophagrams in children may be difficult, multiple-phase swallowing disorders are seen with sufficient frequency in children with DD and dysphagia to warrant the effort. Indeed, in the child who is having difficulty advancing to solids and in the child with gastroesophageal reflux who is failing to thrive, the possibility of esophageal motility disorder should always be considered.

In addition to illustrating the dynamics of team participation in managing FBI, gastroesophageal reflux, and nutrition, Reilly and Carr’s case history suggests important questions about patient care for children with DD and dysphagia which relate to the effects of prolonged reliance on nasogastric tube feeding for nutrition: • Do the repeated experiences with insertions of the tube and the sensations associated with the presence of the NGT impact negatively on swallowing and on the development of skills needed to eat solids and to drink liquids from a cup? • How does prolonged use of the NGT effect gastroesophageal reflux? • Would the child, the parents, and the educational and medical specialists who were treating the child have benefited from the assistance of the multidisciplinary pediatric dysphagia team if the child had been referred in infancy and followed by the team? • Would early referral for dysphagia team management have been cost effective in the long term? Currently, the decision to refer a child with complex dysphagia for comprehensive dysphagia team evaluation is determined by the following criteria: the child’s health; the judgment of the medical, clinical, and educational specialists involved in his or her care; the family needs and its focus on the issues; and the availability of the service. More work is needed to develop standards of care that would assist in making the decision to refer. Reilly and Carr make a good case for early involvement of the Pediatric Dysphagia Team for managing complex dysphagia in the child with DD. Justine Joan Sheppard, Ph.D., CCC-SLP 111 Chincopee Road Lake Hopatcong, NJ 07849-1562 email:[email protected]

Reference 1.

Reilly S, Carr L: Foreign body ingestion in children with severe developmental disability: a case study. Dysphagia 16:68–73, 2001