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Feeding & Nutrition Issues in Children with Complex Conditions

Children and youth with special health care needs (CYSHCN) often have complex feeding and nutrition issues. In these cases, the primary care clinician is responsible for monitoring growth, nutritional status, and swallowing safety while adapting to the child’s evolving abilities, preferences, and metabolic demands. The vital nature of feeding can make this an emotional issue for families when there are problems.

Faltering Growth

“Faltering growth” is a term used to express inadequate weight and/or height gain and to replace the more judgmental medical phrase “failure to thrive.” Faltering growth occurs frequently in many chronic conditions and genetic syndromes.
Child wearing tucked up top and showing feeding tube on stomach
“Undernourishment” is also used to express lower than expected weight gain or inadequate nutrient intake. [National: 2017] Inadequate intake 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]
Faltering growth may be due to:
  • Oropharyngeal motor weakness or swallowing problems. Even those with mild feeding dysfunction, such as those requiring chopped or mashed foods, are at risk.
  • Frequent illnesses affecting oral intake or ability to tolerate formulas given via feeding tube
  • Very restrictive preferences (“picky”) or sensory-defensive eaters
  • Side effects of medications affecting appetite (e.g., stimulants)
  • Unrecognized or under-treated gastro-intestinal problems, such as reflux, constipation, poor motility, or intolerance to foods (e.g., lactose intolerance). For assessment and management information, see Gastroesophageal Reflux Disease and Constipation.
  • High cost of nutritious foods, recommended formulas, or supplements

Overweight

Children with developmental disabilities or intellectual disabilities have higher risks for obesity due to sedentary lifestyles, physical barriers, dietary preferences, medications affecting metabolism or energy levels, and family factors (e.g., families may unknowingly encourage excessive consumption by requiring children to finish a full plate of food when the child isn’t hungry). [Must: 2014] Infants with medical problems may not be able to breastfeed and therefore use infant formula, which is associated with higher weight gain as the infant matures. [Rzehak: 2017] [Uwaezuoke: 2017] Identifying and addressing these issues can be time-consuming and frustrating. See Obesity in Children .

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. [Ptomey: 2015] In addition, the discussion of nutrition in a child with a chronic condition may be a sensitive topic. Terms used by medical providers (e.g., "failure to thrive" or “obesity”) 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] Parents of children with excessive weight may feel ashamed or helpless if they have tried weight management techniques without success, or they may be tired of dealing with a constantly whining, pleading child who dislikes eating healthy foods.
Other challenges include:
  • Weight-for-height percentiles and body mass index may not be adequate to assess under-nourishment even though they are frequently used in the primary care setting. [Fung: 2002]
  • Use of evidence-based, condition-specific growth charts is controversial due to medical and nutritional confounders. [Zemel: 2017]
  • Standard measures of nutritional status, such as serum albumin and prealbumin, may not be consistently reliable in this population. [Ong: 2014] [Jaramillo: 2016] Elevated inflammation can distort serum levels of micronutrients. [Cho: 2017]
  • 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 conditions. Some children may have decreased physical activity and decreased caloric need while others will have increased caloric need due to the presence of spasticity, constipation, drooling, and/or excessive sweating.

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 during illness).
  • Measure fat stores if you have a skinfold caliper, or refer to a nutritionist. Use of bioelectrical impedance analysis to evaluate body composition is emerging as a fairly reliable measure although norms for various pediatric populations are still being established. [Samson-Fang: 2013]
  • 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 non-ambulatory children.
  • Use condition-specific growth charts when available and recommended by experts.

Resources

Services for Patients & Families in Utah (UT)

For services not listed above, browse our Services categories or search our database.

* number of provider listings may vary by how states categorize services, whether providers are listed by organization or individual, how services are organized in the state, and other factors; Nationwide (NW) providers are generally limited to web-based services, provider locator services, and organizations that serve children from across the nation.

Helpful Articles

Tuberous Sclerosis Alliance

Authors & Reviewers

Initial publication: December 2013; last update/revision: September 2018
Current Authors and Reviewers:
Authors: Lynne M. Kerr, MD, PhD
Lisa Samson-Fang, MD
Reviewer: Jennifer Goldman-Luthy, MD, MRP, FAAP

Page Bibliography

Cho JM, Yang HR.
Hair Mineral and Trace Element Contents as Reliable Markers of Nutritional Status Compared to Serum Levels of These Elements in Children Newly Diagnosed with Inflammatory Bowel Disease.
Biol Trace Elem Res. 2017. PubMed abstract

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

Jaramillo C, Johnson A, Singh R, Vasylyeva TL.
Metabolic disturbances in patients with cerebral palsy and gastrointestinal disorders.
Clin Nutr ESPEN. 2016;11:e67-e69. PubMed abstract

Must A, Curtin C, Hubbard K, Sikich L, Bedford J, Bandini L.
Obesity Prevention for Children with Developmental Disabilities.
Curr Obes Rep. 2014;3(2):156-70. PubMed abstract / Full Text

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

National Guideline Alliance (UK).
Faltering Growth – recognition and management.
National Institute for Health and Care Excellence: Clinical Guidelines. 2017. PubMed abstract

Ong C, Han WM, Wong JJ, Lee JH.
Nutrition biomarkers and clinical outcomes in critically ill children: A critical appraisal of the literature.
Clin Nutr. 2014;33(2):191-7. PubMed abstract

Ptomey LT, Wittenbrook W.
Position of the Academy of Nutrition and Dietetics: nutrition services for individuals with intellectual and developmental disabilities and special health care needs.
J Acad Nutr Diet. 2015;115(4):593-608. PubMed abstract

Rzehak P, Oddy WH, Mearin ML, Grote V, Mori TA, Szajewska H, Shamir R, Koletzko S, Weber M, Beilin LJ, Huang RC, Koletzko B.
Infant feeding and growth trajectory patterns in childhood and body composition in young adulthood.
Am J Clin Nutr. 2017;106(2):568-580. PubMed abstract

Samson-Fang L, Bell KL.
Assessment of growth and nutrition in children with cerebral palsy.
Eur J Clin Nutr. 2013;67 Suppl 2:S5-8. PubMed abstract

Uwaezuoke SN, Eneh CI, Ndu IK.
Relationship Between Exclusive Breastfeeding and Lower Risk of Childhood Obesity: A Narrative Review of Published Evidence.
Clin Med Insights Pediatr. 2017;11:1179556517690196. PubMed abstract / Full Text

Zemel BS.
Influence of complex childhood diseases on variation in growth and skeletal development.
Am J Hum Biol. 2017;29(2). PubMed abstract