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Feeding Disorders

Background

Medical Management Considerations

References

Resources for Families

Advisory Committee

Publication Information

BACKGROUND

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Description

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.

Common Feeding Problems

  • Oral losses due to poor lip closure, jaw instability, exhaled food, food carried out on the tongue, etc.
  • Coughing, gagging, and choking (signs of difficulty in swallowing) due to troublesome texture, controlling flow,
    etc.
  • Pocketing (holding food in the cheeks or front of mouth) due to oral transport problem or food refusal
  • Prolonged feeding time due to slow oral transport, pausing to breathe, etc.
  • Gastroesophageal reflux (GER) [Return to the index for a full document on GERD]
  • Aspiration due to impaired protective responses or sensory or motor uncoordination of the oropharynx, larynx, or
    trachea [Return to the index for a full document on Aspiration]
  • Malabsorptive disorder in small intestine
  • “Dumping syndrome” (stomach is emptied too rapidly)
  • Constipation [Return to the index for a full document on Chronic Constipation]
  • Failure to thrive (inadequate growth)

Contributing Factors

Anatomic abnormalities

  • Cleft lip or palate
  • Midline facial deformities
  • Tracheoesophageal fistula
  • Choanal atresia

Oral-motor dysfunction

  • Cerebral palsy
  • Abnormal oral tone or reflexes
  • Hypertonicity
  • Hyper- or hyposensitivity
  • Poor oral-motor coordination
  • Tongue thrust
  • Vallecular pooling
  • Nasal or tracheal aspiration
  • General motor dysfunction
  • Positioning/posture problems
  • Global neurological abnormalities
  • Trunk instability/hypotonia
  • Seizure disorders
  • Generalized spasticity
  • Hydrocephalus
  • Coexistant medical conditions
  • Recurrent or chronic infections
  • Chronic lung disease
  • Gastroesophageal reflux/esophagitis
  • Constipation/GI dysmotility
  • Congenital heart disease
  • Chronic pulmonary conditions
  • Malnutrition
  • Medications that may cause lethargy or passive muscle tone
  • Anticonvulsants (barbiturates, benzodiazepines)
  • Neuroleptics (thioridazine, chlorpromazine)
  • Behavioral factors
  • Food/medicine aversion
  • Temperament
  • Environmental factors
  • Parental separation
  • Emotional disorder
  • Inadequate or abusive caregiver
  • Socioeconomic instability
  • Lack of health insurance or inadequate coverage for health problems and supportive care

MEDICAL MANAGEMENT CONSIDERATIONS

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Initial Evaluation

The initial evaluation can be performed by the primary care provider, nutritionist, and feeding specialist (speech pathologist, occupational therapist, or nurse).

  • Consult with family to find out effect of feeding on family, concerns, or issues.
    • Evaluate dietary intake.
  • Obtain feeding history, medical history.
  • Determine degree of malnutrition, if any.
    • Lab markers of nutrition include serum albumin and prealbumin
  • Establish a target weight and height; utilize growth curves.
  • Conduct medical evaluation.
    • Evaluate somatic growth.
    • Conduct orofacial, cardiorespiratory, abdominal, cranial nerve, and neurodevelopmental examinations.
    • Identify acute or chronic problems that may interfere with feeding/swallowing.
  • Perform feeding evaluation.
    • Clinical evaluation: positioning; pathologic reflexes; oral-motor function; sensory factors;
      caregiver-child interaction/social factors; temperament; behavior
    • Special studies as necessary: videofluoroscopy (modified barium swallow) aspiration; upper
      gastrointestinal tract series aspiration, GER; technetium scan (i.e., gastroesophageal scintigraphy,
      milk scan) GER, gastric emptying; pH probe GER, esophagitis; gastroesophageal duodenoscopy (endoscopy)
      GER, esophagitis; oximetry
    • Consultations to consider: occupational therapist; speech-language pathologist; nutritionist; nurse;
      behavior therapist; gastroenterologist; otorhinolaryngologist; pediatric surgeon; dentist; social
      Services

Management

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.

Dietary Management

  • Increase caloric density of solids and formulas as necessary.

Meal Modification/Feeding Management

  • Alter food textures (e.g., blend, puree, mash, add thickeners), temperature, or utensils to facilitate
    functional feeding.
  • Optimize oral-motor function; provide oral-motor therapy as necessary.
  • For bottle feedings, evaluate nipples to ensure correct flow rate, firmness, and length for optimal feeds.
  • For spoon feedings, use a flat, plastic spoon, place downward pressure on the tongue, and bring the spoon
    straight out of the person’s mouth rather than scraping the upper lip.
  • Encourage eating slowly.
  • Encourage small, frequent meals; avoid overfilling stomach.
  • Modify feeding time and pace to coincide with the time and pace at which the individual best eats.

Proper Positioning/Posture

  • Position individual to maximize his or her ability to flex and breathe.
  • Provide adequate head support.
  • Firmly support hips and trunk to provide a stable base.
  • Assure jaw, head, neck, and trunk alignment.

Medical Management

  • Ensure optimal nutritional intake.
  • Confirm optimal treatment of existing medical conditions.
  • Minimize gastroesophageal reflux. [Return to the index for a full document on GERD]
  • Avoid and treat constipation. [Return to index for a full document on Chronic Constipation]
  • Consider enteral feedings.

Behavior and Environment Management

  • Improve mealtime environment, structure mealtimes, allow child to focus on eating, and encourage positive
    reinforcement.
  • Recognize and promote communicative and nurturing aspects of meals for individuals and their caregivers.
  • Address other behavioral, environmental, and social issues.

Ongoing Management Plan Evaluation and Revision

  • Constantly monitor individual’s progress and revise care plan as appropriate.

Nonoral Feeding Options

Supplemental tube feedings may be necessary to provide the person adequate calories and may be preferred if oral feeding is deemed unsafe.

No surgical placement necessary

  • Nasogastric (NG) tube/Nasojejunal tube
  • Orogastric (OG) tube
  • Duodenal tube

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.

Surgical placement required

  • Gastrostomy tube
  • Jejunostomy 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.

Indications for gastrostomy placement

  • Nasogastric feeds for more than two months
  • Protracted feeding times
  • Recurrent aspiration during feedings, aspiration pneumonias
  • Inadequate nutrition by oral intake
  • Airway obstruction
  • Food refusal
  • Failure of more conservative treatments
  • Lack of gag reflex

REFERENCES

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Peer-Reviewed Journal Articles

Chong, S.K. (2001). Gastrointestinal Problems in the Handicapped Child. Current Opinion in Pediatrics, 13(5), 441-446.

Cohen, S.A., & Navathe, A.S. (1999). Feeding the Developmentally Delayed Child. Journal of the Medical
Association of Georgia, 88
(2), 71-76.

Couriel, J.M., Bisset, R., Miller, R., Thomas, A., & Clarke, M. (1993). Assessment of Feeding Problems in Neurodevelopmental Handicap: A Team Approach.
Archives of Disease in Childhood, 69(5), 609-613.

Gisel, E.G., Birnbaum, R., Schwartz, S. (1998). Feeding Impairments in Children: Diagnosis and Effective Intervention [Abstract].
The International Journal of Orofacial Myology, 24, 27-33.

Luiselli, J.K. (1989). Behavioral Assessment and Treatment of Pediatric Feeding Disorders in Developmental Disabilities [Review].
Progress in Behavior Modification, 24, 91-131.

O’Brien, S., Repp, A.C., Williams, G.E., & Christophersen, E.R. (1991). Pediatric Feeding Disorders. Behavior
Modification, 15
(3), 394-418.

Schwarz, S.M., Corredor, J., Fisher-Medina, J., Cohen, J., & Rabinowitz, S. (2001). Diagnosis and Treatment of Feeding Disorders in Children with Developmental Disabilities.
Pediatrics, 108(3), 671-676.

Stevenson, R.D. (1995). Feeding and Nutrition in Children with Developmental Disabilities. Pediatric Annals, 24
(5), 255-260.

Tawfik, R., Dickson, A., Clarke, M., Thomas, A.G. (1997). Caregivers’ Perceptions Following Gastrostomy in Severely Disabled Children with Feeding Problems [Abstract].
Developmental Medicine and Child Neurology, 39(11), 746-751.

Other Publications

American Speech-Language-Hearing Association. (2006). Feeding and Swallowing Disorders in Infants and
Children.
Retrieved on June 9, 2006 from http://www.asha.org/public/speech/disorders/feeding_swallowing.htm

Batshaw, M.L., Perret, Y. M. (1986). Feeding the Child with Handicaps. In Children with Handicaps: A Medical
Primer
(2nd ed., pp. 129-137). Baltimore: Paul H. Brookes.

Eicher, P.S. (1997). Feeding. In M.L. Batshaw (Ed.), Children with Disabilities (4
th ed., pp. 621-641). Baltimore: Paul H. Brookes.

Jepsen, C., Nickel, R.E. (2000).Nutrition and Growth. In R.E. Nickel L.W. Desch (Eds.), The Physician’s Guide to
Caring for Children with Disabilities and Chronic Conditions
(pp. 77-98). Baltimore: Paul H. Brookes.

Rogers, B.T., Lock, T.M. (1996).Pediatric Dysphagia. In A. J. Capute & P. J. Accardo (Eds.), Developmental
disabilities in infancy and childhood: Vol. 2. The spectrum of developmental disabilities
(2
nd ed., pp. 163-178). Baltimore: Paul H. Brookes.

RESOURCES FOR FAMILIES

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American Academy of Neurology

Phone: (651) 695-2717

Phone: (800) 879-1960

E-mail: memberservics@aan.com

http://www.aan.com

American Speech-Language-Hearing Association

Voice/TTY, Professionals/Students: (800) 498-2071

Voice/TTY, Public: (800) 638-8255

E-mail: actioncent@asha.org

http://www.asha.org

The Center for Pediatric Feeding & Swallowing Disorders

St. Joseph’s Children’s Hospital

Phone: (973) 754-4300

http://www.sjhmc.org

http://www.feedingcenter.org

National Information Center for Children and Youth with Disabilities (NICHCY)

Voice/TTY: (800) 695-0285

E-mail: nichcey@aed.org

http://www.nichcy.org

National Organization for Rare Disorders (NORD)

Phone: (203) 744-0100

Voice mail: (800) 999-NORD

TTY: (203) 797-9590

E-mail: orpan@rarediseases.org

http://www.rarediseases.org

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

http://www.tarjancenter.ucla.edu

ADVISORY COMMITTEE

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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.

PUBLICATION INFORMATION

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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

(916) 901-9645

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.

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