To the Editor:
The interesting report of Jones et al. (1) sheds light on the tip of the malnutrition iceberg in children with severe neurologic disabilities. Growth failure in such patients is frequently due to insufficient caloric intake secondary to oral-motor dysfunction, poor appetite, and side effects of medications (2). Nutritional intervention following gastrostomy is often associated with significant catch-up growth in weight and length (3). Nevertheless, it is common experience, and it has been demonstrated that children and adolescents with profound CNS disorders can grow or maintain their weight on energy intakes less than 7 kcal/cm (i.e., 16% to 50% of the recommended dietary allowances (RDA) for age) (4,5). We suggest that such low-energy regimens may increase the risk of inadequate micronutrient intake not only for children fed amino acid-based formulas, as reported by Jones et al., but also for those fed commonly used commercial formulas designed for enteral nutrition.
Clinical records of 6 of our patients (4 females and 2 males, median (range) age 13 (2–19) years) with severe neurologic impairment fed by gastrostomy were reviewed. All patients (four with cerebral palsy and two with encephalitis) were nonambulatory and totally dependent on others for all activities of daily life; none of the patients were verbal and none could feed themselves. Five patients were on anticonvulsant therapy, two patients had ventriculoperitoneal shunts, and one patient had a permanent tracheostomy. Gastrostomy was performed when oral feeding became obviously unsafe and thereafter the patients were exclusively fed commercial formulas (1 Pediasure (Abbott), 2 Nutrison Standard, 1 Nutrison Energy, and 2 Nutrini Energy Multifibre (Nutricia)). Median weight for length was 89 (83–139%) and the median daily energy intake, adjusted to obtain the desired growth or maintain weight, was 775 (500–1050) kcal/d (i.e.: 6.5 (4.8–9.4) kcal/cm). At these daily energy intakes (27% to 57% of RDA for age or weight), micronutrient and vitamin intake would have been variably (and sometimes severely) inadequate according to RDA for age (Table 1) (6). In particular, calcium, iron, and vitamin D were inadequate in the prescribed amount of formula. Depending on individual dietary needs and to prevent the risk of long-term deficiencies, regular supplements of calcium, iron and supplements of a multivitamin/trace element preparation were administered and their serum levels were checked at least once a year.
Energy requirements and growth potential in severely disabled children are incompletely known and referring to RDA for normal children can only approximate both caloric and micronutrient needs in such patients. Aetiology, type, and severity of the disabling condition, concomitant medications and associated diseases may also interfere with their nutritional requirements. In the specific situation of extreme disability, the goal of a normal weight and height for age is clearly unattainable and perhaps of doubtful advantage (e.g., postural problems, managing difficulties by the family—often the mother alone). Therefore, when commercial formulas are used and individualized clinical considerations suggest that a “lower” energy intake is advisable, attention should be paid to the long-term risk of micronutrient deficiencies since clinical manifestations may be subtle or delayed. In our opinion, prophylactic supplementation and regular serum monitoring of critical nutrients represent a reasonable strategy.
1. Jones M, Campbell KA, Duggan C, Young G, Bousvaros A, Higgins L, Mullen E. Multiple micronutrient deficiencies in a child fed an elemental formula. J Pediatr Gastroenterol Nutr 2001; 33:602–05.
2. Hals J, Ek J, Svalastog AG, Nilsen H. Studies on nutrition in severely neurologically disabled children in an institution. Acta Paediatr 1996; 85:1469–75.
3. Shapiro BK, Green P, Krick J, Allen D, Capute AJ. Growth of severely impaired children: neurological versus nutritional factors. Dev Med Child Neurol 1986; 28:729–33.
4. Bandini LG, Schoeller DA, Fukagawa NK, Wykes LJ, Dietz WH. Body composition and energy expenditure in adolescents with cerebral palsy or myelodysplasia. Pediatr Res 1991; 29:70–7.
5. Bandini LG, Puelz-Quinn H, Morelli JA, Fukagawa NK. Estimation of energy requirements in persons with severe central nervous system impairment. J Pediatr 1995; 126:828–32.
6. Italian Society of Human Nutrition. Recommended Dietary Allowances for Energy and Nutrients in the Italian Population (L.A.R.N.). Revised on 1996.