One third of all children with a developmental disability will develop a feeding problem significant enough to interfere with their nutrition, well-being, and social integration. The incidence of feeding problems appears to increase with degree of disability; for example, some studies estimate that 80% or more of severely disabled people will have some type of feeding disorder. The feeding difficulty often results from multiple interacting factors that disrupt normal feeding development. People with feeding and swallowing difficulties are at a risk for inadequate protein energy intake, malnutrition, dehydration, and respiratory problems.
The initial evaluation can be performed by the primary care provider, nutritionist, and feeding specialist (speech pathologist, occupational therapist, or nurse).
The ultimate goal of management is to provide necessary calories and nutrients to the person in the safest and most enjoyable manner. The management plan should be based on the person’s neurological function, oral-motor skills, and the presence of gastroesophageal reflux and other conditions. Due to the complexity of many feeding problems of a developmentally disabled person, a multidisciplinary approach to clinical management, including the person’s family/caregiver, best leads to the development of an individualized plan to meet the child’s specific needs.
Most importantly, assessment of progress and effectiveness is necessary to develop the most appropriate feeding program with the best results for the individual. The feeding program should be revised periodically for optimal outcomes.
Supplemental tube feedings may be necessary to provide the person adequate calories and may be preferred if oral feeding is deemed unsafe.
Nasogastric feeding is often the first step and is a fairly safe way to provide extra nutrients for up to a few months, although it is undesirable for long-term use due to discomfort, appearance, interference with swallowing and oral feeding, and risk of irritation or erosion of the nasal and oral mucosa. Overnight feeding with an NG tube should be avoided due to risk of aspiration related to the migration of the tube.
A gastrostomy may be needed when a person is otherwise unable to safely receive necessary nutrition. Placement of a gastronomy tube also allows for the separation of nutritional and oral-motor therapies when the requirements of these interventions conflict. Fundoplication may also be considered, particularly in people with significant gastroesophageal reflux unresponsive to medical management. Parents and caregivers can continue to actively feed the individual, often improving nutrition, quality of life for the individual, and sometimes oral-motor function.
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American Academy of Neurology
Phone: (651) 695-2717
Phone: (800) 879-1960
American Speech-Language-Hearing Association
Voice/TTY, Professionals/Students: (800) 498-2071
Voice/TTY, Public: (800) 638-8255
The Center for Pediatric Feeding & Swallowing Disorders
St. Joseph’s Children’s Hospital
Phone: (973) 754-4300
National Information Center for Children and Youth with Disabilities (NICHCY)
Voice/TTY: (800) 695-0285
National Organization for Rare Disorders (NORD)
Phone: (203) 744-0100
Voice mail: (800) 999-NORD
TTY: (203) 797-9590
The Resource Foundation for Children with Challenges
Special Child: For Parents and Caregivers of Children with Special Needs http://www.specialchild.com/index.html
The Tarjan Center for Developmental Disabilities at UCLA
Romie H. Holland, M.D.
Theodore A. Kastner, M.D., M.S.
Felice Weber Parisi, M.D., M.P.H.
James R. Popplewell, M.D.
Patricia Samuelson, M.D.
Funded by a grant from the California Department of Developmental Services
For more information, contact:
Center for Health Improvement
1330 21st Street, Suite 100
Sacramento, CA 95814
This document does not provide advice regarding medical diagnosis or treatment for any individual case, and any opinions or statements contained in this document are not intended to serve as a standard of medical care. Physicians are encouraged to view the considerations presented in this document in light of evolving scientific information. This document is not intended for use by the layperson. Reproduction of this document may be done with proper credit given to the California Department of Developmental Services and the Center for Health Improvement.