Nutrition and Feeding for Children With Developmental Disabilities

Children with neurologic motor disorders such as cerebral palsy (CP) and muscular dystrophies are a challenging, diverse population of patients who require an innovative approach to nutritional management. These children and their families experience unique and daunting challenges. Medical expenses in children with CP are 10 times those of other children. In addition to the family’s increased financial burden, caregivers spend many hours a week providing and coordinating care. This can lead to a higher rate of negative work-life balance for many families. For this reason, a medical home may be considered to provide multidisciplinary care which will support both the child and the family.

This population is best cared for in the outpatient setting by a coordinated medical team involving practitioners, nurses, dietitians, therapists, social workers, and psychologists. Access to this type of coordinated care is limited, and care can be fragmented. Although families of patients with CP and neurologic motor disorders share similar concerns, each child is fundamentally distinct, both in the manifestation and experience of their disorder. Nutritional care plans need to be developed for the individual, taking into consideration their level of motor function and the needs and goals of their caregivers. The practitioner must approach these families in a sensitive, nonjudgmental manner to maximize medical and social functioning and quality of life.

Cerebral Palsy

CP is defined as a permanent disorder of the development of movement and posture, causing limitation of activity. The motor disorders of CP are often accompanied by disturbances of sensation, perception, cognition, communication, and behavior. These children are often affected by epilepsy and develop secondary musculoskeletal problems. The population of children with CP is growing. The incidence of CP has been estimated at 3.6 children per 1000 live births. Children who are premature and 1550 g have an incidence of CP of 65 per 1000 live births. Approximately 8% of premature infants born between 22 and 32 weeks’ gestation will have some component of CP. Although the survival of preterm neonates between 22 and 25 weeks is improving, the proportion with severe disability is not changing. Life expectancy of children with CP is also improving, with studies showing 50% survival into the late 20s. The nutritional management of these children is therefore critical to the patient, family, and society.

CP is classified according to the Gross Motor Function Classification System (GMFCS). Nutritional needs and growth assessment vary greatly between these groups.

Children who are characterized at lower levels (GMFCS 1) are able to walk but appear to have decreased speed and coordination. As children have more motor difficulty and require more assistive devices, the GMFCS score rises. The most affected individuals are categorized as GMFCS V and require a manual wheelchair for all transportation.

Growth Failure and Malnutrition

Growth failure and malnutrition are very common in patients with CP. Malnutrition is classically identified in patients with short stature, low lean body mass, and low muscle mass. These patients have below-average weight, below-average linear growth, and decreased muscle mass and fat stores compared with the general population. The North American Growth in Cerebral Palsy Project evaluated patients with CP between the ages of 2 and 18 years. In patients with moderate to severe CP (GMFCS III-V) 47% had weight less than the 5th percentile and 68% had length less than the 2.5 percentile for age and sex. Between 29% and 46% of these children are undernourished. A more recent study demonstrated malnutrition in 47.5% of children with severe motor impairment and 26.5% of those with mild motor impairment. Those children who have a GMFCS of I to II grow at similar rates to their peers and can expect to reach weights and heights close to those of typical age/sex-matched children in the general population. ^, Patients who are GMFCS III to V tend to grow in length more slowly and become more divergent from the general population as they get older.

Causes of Malnutrition

Nutrition and growth disorders in patients with CP can be the result of a number of factors, both nutritive and nonnutritive. Nonnutritive factors include the severity of neurologic injury (negative neurotropic effects), motor impairment and ambulatory status, medications, endocrine disorders (growth hormone deficiency), inherent genetic factors, and social/environmental factors. Other physical factors leading to poor growth are a direct result of decreased weight bearing and mechanical stress on bone, leading to decreased bone formation and bone growth in children.

The nutritional components of growth failure include oropharyngeal dysphagia, digestive losses (such as gastroesophageal reflux), inappropriate dietary intake, and altered energy needs.

Children with CP have a lower caloric intake than seen in similarly aged children. ^, Feeding a child with CP can be complex and require long periods of time. Ensuring appropriate positioning, presentation of differing textures, and interaction between the caregiver and the child are important. It has been reported that 38% of families require more than 3 hours a day to feed their child and 3% of families require more than 6 hours a day to feed their child with a developmental disability. ^,

BENEFITS OF NUTRITIONAL REHABILITATION

Malnutrition affects the overall health of these children and leads to increased healthcare use, decreased social participation, declining motor function, poor bone health, and decreased life expectancy. Malnutrition has been demonstrated to lead to increased morbidity and mortality. For GMFCS levels I to II, weight less than the 5th percentile was associated with a hazard ratio of 2.2 (95% confidence interval: 1.3 to 3.7). For children with GMFCS level III to IV, weight less than the 20% was associated with a mortality hazard ratio of 1.5 (95% confidence interval: 1.4 to 1.7).

Children with CP who are malnourished have been found to have decreased social participation and increased irritability. In one study, triceps skinfold z score correlated with child healthcare use, child participation in usual activities, and family activities. Each standard deviation increase in triceps skinfold was associated with a 20% reduction in days missed from school and 33% reduction in missed activities for the family over 4 to 8 weeks.

DEVELOPING A NUTRITIONAL PLAN

The first step in developing a nutritional plan is to estimate the energy, protein, free water, and micronutrient needs of the patient. The provider should compare the estimated needs to the current nutritional status of the patient. Feeding history, anthropometrics, and laboratory evaluation are the building blocks of a nutrition assessment. The provider and the family need to work together to determine the appropriate foods and supplements to achieve nutritional goals. This decision also involves assessment of the patient’s swallowing function and the consideration of possible supplemental tube feedings. Finally, the nutritional plan needs to be implemented, monitored, and adapted to meet the child’s changing needs.

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