Poor nutritional status, which is common in children with cerebral palsy (CP), has generated considerable interest because of its wide-ranging impact on the children’s health and well-being. Understanding the causes of poor nutrition, and the appropriate measurements required to interpret the nutritional status in children with CP, are integral to developing appropriate nutritional intervention strategies. Focusing attention on improving nutrition early in the lives of children with CP affords families and care providers with a unique opportunity for intervention, which may result in better outcomes for the children.
Key points
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In children with cerebral palsy (CP), undernutrition has significant negative consequences.
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Poor oral-feeding skills are the primary cause of inadequate nutrition in children with CP.
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Understanding the causes of poor nutrition guides nutritional intervention.
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Overcoming the challenges inherent in the physical measurement of children with CP by using heights extrapolated from segmental measures and triceps skin fold, together with weights, weight gain velocity, and monitoring these measures on appropriate growth charts, informs care providers about the need for nutritional rehabilitation and helps monitor the progress toward collaboratively established nutrition goals.
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Understanding the multidimensional aspects of oral feeding and the timing of enteral nutrition support are important elements in the nutrition rehabilitation toolkit.
Introduction
Nature of the Problem
Cerebral palsy (CP) describes “a group of persisting, nonprogressive conditions in the development of motor control that appear very early in life.” “The motor disorders of CP are often accompanied by disturbances of sensation, perception, cognition, communication, and behavior; by epilepsy; and by secondary musculoskeletal problems.” Although the primary problems associated with CP are neurodevelopmental in nature, challenges with growth and nutrition are also common in affected children.
As a group, children with CP are smaller and more poorly nourished than their typically developing peers. These differences between affected and nonaffected children are more marked with increasing age and with the severity of the motor impairment. A complex interplay of these factors and other nutritional and non-nutritional factors impacts the growth and nutritional status of children with CP.
Good nutrition is the cornerstone of health and well-being for all children, whether affected by CP or not. Weight gain and growth along predicted trajectories, reassure families and care providers that a child is thriving and is healthy. The same holds true for children with CP, but in these children the measuring and monitoring of growth is fraught with challenges that must be overcome to be able to interpret nutritional adequacy. Understanding when a child’s nutritional status is faltering is important because poor nutrition has serious consequences and is potentially remediable.
Introduction
Nature of the Problem
Cerebral palsy (CP) describes “a group of persisting, nonprogressive conditions in the development of motor control that appear very early in life.” “The motor disorders of CP are often accompanied by disturbances of sensation, perception, cognition, communication, and behavior; by epilepsy; and by secondary musculoskeletal problems.” Although the primary problems associated with CP are neurodevelopmental in nature, challenges with growth and nutrition are also common in affected children.
As a group, children with CP are smaller and more poorly nourished than their typically developing peers. These differences between affected and nonaffected children are more marked with increasing age and with the severity of the motor impairment. A complex interplay of these factors and other nutritional and non-nutritional factors impacts the growth and nutritional status of children with CP.
Good nutrition is the cornerstone of health and well-being for all children, whether affected by CP or not. Weight gain and growth along predicted trajectories, reassure families and care providers that a child is thriving and is healthy. The same holds true for children with CP, but in these children the measuring and monitoring of growth is fraught with challenges that must be overcome to be able to interpret nutritional adequacy. Understanding when a child’s nutritional status is faltering is important because poor nutrition has serious consequences and is potentially remediable.
Factors affecting nutrition and growth in children with cerebral palsy
The children with CP who are at the greatest risk of having significant nutritional problems are those who present with poor weight gain at a young age, who have significant motor impairments, and who have feeding and swallowing problems. Other factors affecting nutrition are detailed in Box 1 .
Nutritional factors:
Inadequate intake primarily related to feeding dysfunction
Increased calorie losses
Increased calorie use
Non-nutritional factors:
Age
Genetic factors
Physical factors related to the child’s neurologic condition
Neurotrophic factors
Lack of weight bearing and mechanical stress on the long bones
Endocrine factors
Nutritional Factors
Inadequate intake
The most significant factor affecting the nutritional status of children with CP is inadequate intake to meet metabolic demands. In turn, food processing and swallowing problems, which affect 30% to 40% of children with CP, are the primary reasons for inadequate intake. Box 2 describes the feeding problems that are common in children with CP.
Oral motor/food-processing problems
Swallowing difficulties and airway protection problems
Positioning difficulties
Requiring assistance with feeding
Prolonged feeding times
In general, children with more significant motor impairments have more challenges with oral feeding and have poorer nutritional outcomes. Even mild feeding skill deficits can have a significant impact on the quantity of food consumed. For example, children with CP who require only minor modification of their food texture or viscosity to aid in food processing and swallowing have decreased fat stores, suggesting that they have inadequate energy intake. Other factors affecting food intake are detailed in Box 3 .
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Sensory factors related to the texture and taste of foods can result in the consumption of a limited repertoire of foods that may be nutritionally incomplete
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Fatigue before a meal or resulting from the increased effort of eating
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Prolonged mealtimes cause stress and fatigue in parents and children and spoil the enjoyment of the meal
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Negative feeding behaviors related to mealtime stress or discomfort
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Disturbances in the sensation of hunger and satiety
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Inability to communicate nutritional needs due to speech impediments or intellectual disabilities
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Secondary health conditions, such as gastroesophageal reflux and constipation, cause discomfort and therefore impact oral intake
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Dental caries and dental malocclusion affect the quantity of food consumed
Increased losses
Children with CP can have significant calorie losses from gastroesophageal reflux (GER). GER in children with CP is in part related to foregut motility problems related to an interaction of the enteric and the central nervous system and to positioning challenges, increased intra-abdominal pressure secondary to chronic constipation, spasticity, or musculoskeletal deformity. Aside from its impact on nutritional status, GER can result in esophageal inflammation and dental erosions, and can increase the risk of aspiration.
Energy expenditure
Ambulant children with CP have similar energy expenditures to their age-matched peers, whereas those who are marginally ambulant or nonambulant have significantly lower energy expenditures. This is largely due to decreased activity levels. There has been considerable debate about the influence of muscle inefficiency, spasticity, and dyskinesia on the energy requirements of children with CP. These factors were once thought to increase energy expenditure; however, they may not have as large an influence as was previously thought. At the very least, the contribution of these factors to energy expenditure is subject to considerable variability among children, even when they are matched for motor abilities.
Energy requirements in children with CP may increase if their activity levels increase during intensive therapy sessions or if they have an increased respiratory rate and effort. Among other things, the latter can be related to upper airway obstruction or chronic chest infections.
Non-nutritional Factors Affecting Growth and Nutrition in Children with Cerebral Palsy
In general, nutritional factors have a greater impact on children’s weight, whereas non-nutritional factors have a larger influence on their stature. Growth may be impacted by the direct effects of the negative neurotrophic factors related to the children’s underlying condition or the indirect effects of immobility and lack of weight bearing. Children with asymmetric involvement of CP have decreased growth and fat mass on the more affected side, even in the face of good nutritional status and typical stature for age. This supports the impact of non-nutritional, nonendocrine factors on growth in children with CP. In contrast, the decline in growth with age in children with CP, even when they are well nourished, and the lack of growth spurt accompanying puberty in children with severe motor impairment, speaks to the contributions of endocrine factors affecting growth. These variations in growth may be related to alterations in growth hormone and the hypothalamic pituitary axis. The hypothalamus has an important role in modulating satiety, appetite control, and energy homeostasis and thereby influences growth and nutritional status.
Undernutrition is a remediable condition
With the increased use of enteral nutrition support has come the understanding that malnutrition is remediable and not intrinsic to CP. Weight gain is generally noted early after the introduction of enteral nutrition support in children with CP, although increases in length often lag behind the improvements in weight. Growth is generally better the earlier nutrition is optimized, suggesting a critical window during which nutritional rehabilitation will have the most beneficial effect on growth.
The importance of good nutrition for children with cerebral palsy
Good Nutrition Improves General Health and Participation
In any child, poor nutrition can negatively affect growth, development, and muscle strength, immune function, and wound healing. There is little direct evidence of the relationship between specific health concerns and poor nutrition in children with CP, but its effects on unaffected individuals are also applicable to undernourished children with CP. For example, because poor nutrition is associated with decreased muscle strength, poorly nourished children with CP may have respiratory muscle weakness and decreased coughing strength, making them vulnerable to lower respiratory tract infections. Moreover, malnutrition may hamper the resolution of these infections because of decreased immune function. Furthermore, the impaired wound healing that generally accompanies malnutrition takes on special significance in children with CP who are undergoing surgical procedures. In these children, delayed wound healing may negatively impact their surgical outcomes and prolong their hospital admissions.
Given the negative impact of inadequate nutrition in children in general, there has been considerable interest in determining the specific consequences of poor nutritional status in children with CP. Brooks and colleagues demonstrated that poorly nourished children with CP at all levels of severity have a greater number of secondary and chronic health conditions than children who are better nourished. Similarly, researchers in the North American Growth in Cerebral Palsy Research Collaborative found correlations between general health and nutritional status in children with CP. They noted that not only do undernourished children with CP who have low muscle mass have poorer general health, but those with low fat reserves have increased health care utilization and decreased participation in school and family activities.
Good Nutrition Improves Brain Growth and Neurodevelopmental Outcomes
Poor nutrition can negatively impact brain growth, which leads to adverse neurodevelopmental outcomes in infants. Conversely, nutritional rehabilitation may have neuroprotective effects in children with a perinatal brain injury. If these children are given a diet enhanced in calories and protein early in life, they demonstrate better brain growth, which has a positive effect on their neurodevelopmental outcomes. Nutritional rehabilitation also enhances motor skill development, which in turn, increases a child’s exploratory behavior and learning from their environment.
Good Nutrition Impacts Bone Health
Children with CP who are nonambulant are at increased risk of having bone demineralization, which is compounded by inadequate nutrition, decreased exposure to sunlight, and anticonvulsant use. However, in contrast to other secondary health conditions, which are worsened by underweight status, it is the children with CP who have an increased fat mass and those who are fed via gastrostomy tubes who are at greatest risk of osteopenia-related fractures. This could be related to
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More rapid accrual of body fat than bone minerals
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A direct effect of the excess weight on the bone
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The impact of the fat mass itself on the bone mineral density.
Good Nutritional Status Improves Survival
Good nutrition is a powerful prognosticator of survival in children with CP. At all levels of motor involvement, children with CP who are poorly nourished are at increased risk of mortality. Overall, survivorship in children and adults with CP has increased in the past few decades, which is also the period during which use of gastrostomy tube feeding has increased. Some have speculated that the increased survival in people affected by CP is at least in part related to a better understanding of the nutrient requirements and more aggressive management of nutrition.
Assessment of nutritional status
Health care providers can acquire valuable information about the child’s nutrition by obtaining a detailed history of the primary and secondary health conditions affecting the child and specific information related to the child’s feeding, as outlined in Box 4 .
WHO: Persons involved with feeding; differences in feeding styles
WHAT: The type, texture, viscosity, quantity, and quality of the food consumed
WHEN: The timing, frequency, and duration of meals
WHERE: The feeding environment, distractions
HOW: The feeding routine, technique, adaptive equipment, positioning
Examining the child and observing a typical meal provides valuable insight into the child’s oro-motor skills, aspiration risk, nutritional status, and fat reserves and the feeding interaction and technique. Assessing the children for micronutrient deficiencies may be important if their diets are very limited in quantity and repertoire.
All of the information obtained from the history, observation, and evaluation of the child should to be assessed within the context of the child’s family. Understanding the importance of feeding as a time of nurturance for the child and his or her family, regardless of the stress that mealtime may bring, helps to establish feeding goals and nutritional rehabilitation plans. These plans are often multilayered, reflecting the multidimensional nature of the task of feeding and the expertise on many levels, which different team members, including family members, bring to the table.
Anthropometric Measurements in Children with Cerebral Palsy
To evaluate the nutritional status of a child, anthropometric measurements, both individually and in comparison with each other and with those of other children, are key.
Height and weight are the most basic of the anthropometric measurements. Monitoring weight is relatively easy in children with CP, especially if a wheelchair scale is available on which children can sit or can be weighed indirectly in and out of their chairs. However, the determination of height is not straightforward in children with CP, who are difficult to measure due to the presence of joint contractures, scoliosis, variations in tone, and inability to stand.
When a standing height cannot be obtained, segmental measurements that are widely accepted as valid proxies for height in children with CP can be used. Accurate measurement is essential, as any errors are magnified by the equation that is needed to translate the segmental measurements into estimated lengths ( Table 1 ).
| Measurement | Age | Equipment | Technique | Calculation |
|---|---|---|---|---|
| KH | All ages | KH calipers | With the child sitting, the flat blade of the caliper is placed under the child’s heel. With the knee and ankle joint at 90°, the top blade of the caliper is positioned 2 cm behind the patella over the femoral condyles. The KH (cm) is the distance between the blades of the caliper. | For children 12 y and younger ∗ Estimated height = (2.69) × KH (cm) + 24.2 |
| TL | 2–12 y | Tape measure | The tibia is measured on the medial side. With the child sitting or supine, find and mark the joint space between the tibia and the femur. Then mark the distal edge of the medial malleolus. The TL is the distance between these points in centimeters. | Estimated height = 3.26 × TL (cm) + 30.8 |
∗ For individuals over 12 years of age refer to the tables in by Chumlea.
Once the height is calculated from the segmental measurements, it can be used in comparison with weight and with age and can be plotted on standard growth charts. Although there are challenges in interpretation in the measurements in children with CP compared with unaffected children, the measurements nonetheless allow for trending of weight and height in individual children and can assist in identifying faltering growth over time.
Weight for height and body mass index
In typically growing children, assessing weight in relation to height is a universally accepted concept for assessing nutritional status ; however, in children with CP, weight for height or body mass index (BMI) calculations are of little clinical use because they lack clinical sensitivity due to the children’s altered body composition and growth:
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Weight for height measures fail to identify depleted fat stores in half of children with CP
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Measurement errors are magnified by the BMI calculations
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Microcephaly or macrocephaly can skew the weight for height measurements of the children.
For example, a child with a very small head may appear poorly nourished on the weight for height measurement of a standard growth chart because the typical contribution of the weight of the head to the child’s overall weight is small. Examining the child and using measurements other than the standard weight for height or BMI are required in this circumstance to assess whether or not the child is adequately nourished.
Triceps skin fold measurement
Because weight for height and BMI do not identify children with CP who are undernourished, other measurements to enhance the interpretation of their nutritional status are required. The clinical measurement that performs best as a screening test for depleted fat stores in children with CP is a triceps skin fold (TSF) measurement less than the 10th percentile for age as measured on standard charts. The TSF can be easily measured without causing distress, as outlined in Box 5 .
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Intrathecal Baclofen Bolus Dosing and Catheter Tip Placement in Pediatric Tone Management
Scoliosis, Spinal Fusion, and Intrathecal Baclofen Pump Implantation
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