Feeding & Nutrition

Feeding & Nutrition Issues in Children with Complex Conditions

Undernourishment is common in many chronic conditions and genetic syndromes. Undernourishment may lead to poor brain development and physical growth and is associated with poor health and nutritional status. [Henderson: 2007] Even in children with adequate calories, micronutrients may be deficient. [Hillesund: 2007] Undernourishment may be due to problems with weakness and coordination of swallowing, frequent illnesses, and increased nutritional need during times of high energy expenditures. Children with mild feeding dysfunction, such as those requiring chopped or mashed foods, are also at risk for poor nutritional status. [Fung: 2002]

Evaluation Challenges

Several barriers can make it difficult for the medical home provider to address feeding and nutrition issues. Families may not be covered by their insurance for consultation with nutritionists, and they may not be able to afford visits on their own. In one study, approximately 40% of parents of children with moderate and severe neurological impairment considered their children to be malnourished, but more than half of these children had never been assessed for nutritional status and needs. [Sullivan: 2000] In addition, the discussion of nutrition in a child with a chronic condition may be a sensitive topic for many families. Terms used by medical providers, such as "failure to thrive," may add to feelings of inadequacy and poor parenting. Although parents sometimes spend hours each day trying to get enough food into their child, many parents still have a negative reaction when questioned about their child being underweight, especially if the possibility of a gastrostomy or nasogastric tube is raised. [Namerow: 2003]

Other challenges include:
  • Weight-for-height percentiles and body mass index may not be adequate to assess under-nourishment. [Fung: 2002]
  • Standard measures of nutritional status, such as serum albumin and prealbumin, are not reliable in this population. Even in the face of severe chronic malnutrition, the majority of children with CP, for instance, maintain normal levels of serum albumin and prealbumin.
  • Parents often over-record food intake when compared to actual measures of caloric intake.
  • Linear growth can be difficult to assess when there are contractures, scoliosis, difficulty with standing, and/or lack of cooperation.
  • Determining energy needs may be complicated in children with cerebral palsy or other chronic condition due to decreased physical activity and decreased caloric need in some children and increased caloric need due to the presence of spasticity, constipation, drooling, and/or excessive sweating in others.

Assessment Tips

Since problems with weight may challenge parents' perceptions of their effectiveness, weight gain and growth are best addressed early and routinely. Prevention and treatment should be performed in the medical home setting with intermittent support from a nutritionist. If problems with nutrition don't respond to primary care intervention, referral to a nutrition specialist with expertise in this population is important. Depending on location, this may include developmental pediatricians and gastroenterologists. Other assessment tips include:
  • Measure weight and length/height consistently and watch for trends (weight gain, linear growth, weight loss trends with intercurrent illness).
  • Measure fat stores if you have a skinfold caliper, or refer to a nutritionist.
  • Perform segmental measurements (e.g., tibial length). Extrapolating segmental measures provides a reasonable estimate of height that can be plotted on a standard growth curve.
  • If nutritional status is deemed optimal, but the child continues to have poor growth velocity, evaluate for growth hormone deficiency.
  • Keep in mind that 10-25% weight for age is acceptable in nonambulatory children.
  • Use condition-specific growth charts when available.



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Authors: Lynne M. Kerr, MD, PhD - 12/2013
Lisa Samson-Fang, MD - 12/2013
Content Last Updated: 12/2015

Page Bibliography

Fung EB, Samson-Fang L, Stallings VA, Conaway M, Liptak G, Henderson RC, Worley G, O'Donnell M, Calvert R, Rosenbaum P, Chumlea W, Stevenson RD.
Feeding dysfunction is associated with poor growth and health status in children with cerebral palsy.
J Am Diet Assoc. 2002;102(3):361-73. PubMed abstract

Henderson RC, Grossberg RI, Matuszewski J, Menon N, Johnson J, Kecskemethy HH, Vogel L, Ravas R, Wyatt M, Bachrach SJ, Stevenson RD.
Growth and nutritional status in residential center versus home-living children and adolescents with quadriplegic cerebral palsy.
J Pediatr. 2007;151(2):161-6. PubMed abstract

Hillesund E, Skranes J, Trygg KU, Bohmer T.
Micronutrient status in children with cerebral palsy.
Acta Paediatr. 2007;96(8):1195-8. PubMed abstract

Namerow LB, Thomas P, Bostic JQ, Prince J, Monuteaux MC.
Use of citalopram in pervasive developmental disorders.
J Dev Behav Pediatr. 2003;24(2):104-8. PubMed abstract

Sullivan PB, Lambert B, Rose M, Ford-Adams M, Johnson A, Griffiths P.
Prevalence and severity of feeding and nutritional problems in children with neurological impairment: Oxford Feeding Study.
Dev Med Child Neurol. 2000;42(10):674-80. PubMed abstract