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Nutrition in Clinical Practice
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Invited Reviews

Outpatient Nutrition Management of the Neurologically Impaired Child

Maria R. Mascarenhas, MBBS, Robin Meyers, MPH, RD, LDN and Susan Konek, MA, RD, CSP, CNSD, LDN

From Children's Hospital of Philadelphia, Clinical Nutrition, Philadelphia, Pennsylvania.

Address correspondence to: Susan Konek, Children's Hospital of Philadelphia, Clinical Nutrition, A 217, 34th and Civic Center Blvd, Philadelphia, PA 19104; e-mail: konek{at}email.chop.edu.

The nutrition care of children who are neurologically impaired is a challenge for the nutrition care team. Many factors should be considered in the assessment and development of a nutrition plan. That these children can have significant abnormalities in nutrition status, growth, and body composition should be kept in mind. Energy needs are often hard to assess. For this reason, monitoring of weight status over time provides the best indicator of energy requirements. Protein needs are not increased for the healthy child who is neurologically impaired. Nutrition rehabilitation usually corrects micronutrient deficiencies when they are found. Nutrition assessment is a key component of the care of these children. Height assessment can be difficult, and alternative measures of height should be used in the evaluation of growth. For optimal care, management should be done by a multidisciplinary team including a registered dietitian. Improved nutrition status results in improved health outcomes.

Key Words: malnutrition • disabled children • energy metabolism • child nutrition disorders • infant nutrition disorders

The achievement of adequate nutrition in children with neurological impairment is a challenge to clinicians caring for this group of patients. Growth failure, malnutrition, and overweight are nutrition-related comorbidities that often affect these children. A review of the epidemiology, pathogenesis, assessment, and treatment of these comorbidities has been provided in previous publications.1,2 The principles and practices associated with the nutrition management and care of children with neurological disorders were reviewed in detail in a 2005 report from the Nutrition Committee of the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition.3 This review of outpatient nutrition management of these populations of children focuses on the major and most frequently seen nutrition issues of the neurologically impaired child, in particular those with cerebral palsy and related conditions.

Children with neurological disorders are frequently found to exhibit growth failure and may be malnourished or, conversely, overnourished. For those with growth failure, adequate nutrition support will improve linear growth and weight gain, enhance quality of life and health, and reduce frequency of hospitalization.3 Improved nutrition status decreases irritability and spasticity, increases alertness and developmental progress, and improves wound healing and peripheral circulation. Adequate nutrition may decrease the frequency of aspiration as well as reduce gastroesophageal reflux (GER) in neurologically impaired children.3 In planning nutrition support for children with neurological impairment, major goals in management should include ways to (1) support growth within ranges allowed by the neurological condition; (2) prevent malnutrition; (3) avoid overfeeding, which may decrease quality of life and increase difficulty of care; and (4) support bone health in this group of children at high risk for fracture. The early monitoring of neurologically impaired children is an integral part of their care and one that is based in the outpatient setting. Ideally, outpatient care of these children should be provided by a care team consisting of a physician, dietitian, and nurse, as well as therapists including speech, occupational, and physical, as needed.


   Nutrition Abnormalities
Top
Nutrition Abnormalities
Nutrition Requirements
 Nutrition Assessment
 Management
 Ketogenic Diet
 Treatment of Bone Disease
 Summary
 
Nutrition abnormalities seen in children with neurological impairment primarily involve growth (undernutrition, overnutrition, and linear growth abnormalities), bone health, and micronutrients—especially vitamin D and iron and, to a lesser degree, selenium, zinc, vitamin E, and essential fatty acids.4-6

Growth Abnormalities
The prevalence of growth failure, malnutrition, and overweight in neurologically impaired children is unknown and may vary greatly between disorders. Growth failure may affect 23% of children with cerebral palsy, with 29% malnourished and 14% overweight.7 Malnutrition may occur in as many as 90% of severely disabled children with cerebral palsy.8,9 Increasing incidence of malnutrition is seen as age increases, with increasing IQ deficit, a diagnosis of cerebral palsy, and increasing severity of neurological impairment.10

Non-nutrition factors as well as nutrition factors contribute to growth failure in children with neurological disorders. Non-nutrition factors including type of disability, severity of involvement, degree of oral motor dysfunction, ambulatory status, and cognitive ability may affect growth in these children.11 Children with seizures or spastic quadriplegia and those who are nonambulatory have significantly lower height z scores than do neurologically impaired children who lack these disabilities.12 Linear growth may be affected by lack of weightbearing and immobility.13 Height-for-age z scores decrease with age independent of weight-for-age z scores, suggesting that the effect of non-nutrition factors increases over time.12 Nutrition factors also contribute to linear growth failure, suggested by the fact that height and weight z score deficits are highly correlated in children with neurological impairment.8 Nutrition status has a stronger effect on linear growth in younger than in older children. Long-term undernutrition can have an irreversible effect on growth.14 For these reasons, nutrition monitoring and intervention for children with neurological impairment should begin early in life.

Overnutrition and Obesity
In addition to undernutrition, overweight and obesity are seen in children with neurological impairment. As with undernutrition, energy imbalance is the cause. Overweight and obesity are a greater risk for those who are tube fed. This emphasizes the need for careful monitoring of all nutrition interventions.

Micronutrients
Deficiencies in micronutrients, including vitamins, trace elements, and essential fatty acids have been seen in institutionalized children and in children with neurological impairment receiving elemental formulas when dietary intake is inadequate.4-6 Studies have shown deficiencies of iron, selenium, zinc, essential fatty acids, and vitamins D and E may be present in 15%–50% of neurologically impaired children.4-6,15 These are often corrected with nutrition rehabilitation.

Bone Health
Children with neurological impairment can have a variety of skeletal problems, including scoliosis, joint subluxation, dislocation, factures, and osteopenia. The incidence of fractures in children with cerebral palsy varies from 5% to 30%, and the majority of fractures occur in the lower extremities, especially in the femur.16 It has been shown in children with cerebral palsy that distal femur bone mineral density (BMD) correlates with level of function and history of previous fractures.17 Potential etiologic factors for osteopenia in the child with neurologic impairment include decreased mobility and lack of weightbearing; abnormal bone architecture; temporary immobilization after surgical procedures, violent seizures; mineral and vitamin D deficiency; lack of sun exposure; anticonvulsant (phenytoin, phenobarbital, carbamazepine, valproate) and corticosteroid use; poor nutrition and feeding problems; and a history of prematurity.18-21 Patients with spastic quadriparesis and deceased mobility and nutrition status have the highest risk.22 Repeated fractures worsen quality of life and shorten life expectancy. Henderson et al17 showed osteopenia in the femur occurred in 77% of children with moderate to severe cerebral palsy who were unable to stand. The BMD z score was worse in the femur when compared with that of the spine (–1.8 ± 0.1 vs –3.1 ± 0.2). Fractures were seen in 26% of the children 10 years and older. Severity of neurological impairment, feeding problems, anticonvulsant medication use, and lower fat stores (triceps skinfold [TSF]) all independently contributed to lower BMD z scores in the femur.17 Nonambulatory patients have a lower total body BMD than do ambulatory patients.12 Henderson et al17 has also shown that weight z score was the best predictor of low BMD and that children with cerebral palsy develop osteopenia over time, which is probably related to lower rate of growth in bone mineral when compared with healthy children.23,24

Causes of Nutrition Deficits
Nutrition deficits are multifactorial in children with neurological impairment, related to inappropriate dietary intake relative to nutrient requirements. These factors include the following:

Inadequate dietary energy. Inadequate intake may cause malnutrition and linear growth failure.8,25,26 Children with cerebral palsy consume less dietary energy than do unaffected children.9 These children will, however, grow when supported by nasogastric or gastrostomy tube (GT) feedings, often gaining weight at a rapid rate.9,14 Dependence on a caretaker for feeding is often difficult. The impaired child may be unable to communicate hunger, food preferences, and satiety, resulting in amounts fed less or more than needed. Caretakers may overestimate the amount of food actually consumed, as well as underestimate time needed to feed. Time needed to feed may be lengthy, and adequate intake may not be achieved. Oral motor dysfunction may be present in 40%–50% of children with cerebral palsy.8 Feeding problems in the form of poor suck, breastfeeding difficulties, problems with solid food introduction, and gagging and choking may be reported before a diagnosis of cerebral palsy.27 Severe feeding problems may be present in many children with cerebral palsy and include sucking and swallowing problems, which lead to the use of enteral nutrition. Ninety percent of preschool children with cerebral palsy had oral motor dysfunction, classified as severe in 36% of one group.9 Oral motor dysfunctions may include longer times needed to chew and swallow resulting in longer meal times, inadequate lip closure, drooling, and persistent extrusion reflex and tongue thrust, preventing food from being swallowed. There may be difficulty in forming food boluses in the mouth. Initiation of the swallowing reflex may be delayed, resulting in food accumulating in the vallecula or pyriform sinuses and subsequent aspiration.7,9,28 Severity of feeding dysfunction is strongly associated with indicators of poor health and nutrition status in these children.29 Early, persistent, and severe feeding difficulties are markers for poor growth and may identify children who would benefit from enteral nutrition.30

Increased nutrient losses. These losses contribute to intake deficits in children with poor hand-to-mouth coordination who feed themselves and spill food. Gastroesophageal reflux, which may affect 75% of neurologically impaired children, can result in nutrient loss through emesis.31,32 Esophagitis resulting from acid reflux may contribute to feeding refusal in some children.

Abnormal energy expenditure. Energy expenditure below or above that estimated by predictive equations is seen in many children with neurological impairment. Resting energy expenditure of children with spastic quadriplegic cerebral palsy is lower than that for unaffected children, resulting in greater than anticipated weight gain on low-energy intake levels.33-35 Resting energy expenditure obtained by indirect calorimetry in well-nourished, nonambulatory children with cerebral palsy is lower than are estimates using predictive equations based on weight, age, and gender used for healthy children. Dietary energy needs of children with cerebral palsy who ambulate, however, are higher than are those of unaffected children.34,35 Individual variations in clinical features make it difficult to estimate dietary energy needs in children with neurological impairment. Altered body composition and reduced physical activity make equations developed to calculate energy needs in healthy children invalid for the neurologically impaired.


   Nutrition Requirements
Top
Nutrition Abnormalities
 Nutrition Requirements
Nutrition Assessment
 Management
 Ketogenic Diet
 Treatment of Bone Disease
 Summary
 
Energy
Estimating calorie needs for the neurologically impaired child can be difficult. There are different equations that take into consideration different variables. The degree of motor impairment should be considered. Children with spastic quadriplegia have lower resting energy expenditures than do unaffected children.33-35 Children who are nonambulatory and well nourished have lower measured resting energy expenditures than do ambulatory children. And, as previously noted, children who are ambulatory may have higher needs than do those who are unaffected. Regardless of the method used to estimate needs, close monitoring is the key to appropriate weight gain while optimizing nutrition. If a child is gaining weight too quickly, the calories should be decreased; if they do not gain, then the calories should be increased.

The dietary reference intakes (DRIs) are often used to estimate calorie needs. These equations are based on measurements of the doubly labeled water technique and are based on the needs of healthy children.37 The equations overestimate calorie needs of the neurologically impaired child even when used without the physical activity coefficient. The equations are lengthy and require a length/height measurement. The Krick method is accurate and takes tone into consideration, but it requires a length/height measurement and an estimate of body surface area.38 These measurements may be difficult to obtain. The World Health Organization equations36 (Table 1) can also overestimate energy needs but not to the degree of the DRIs. Using the World Health Organization equations without an activity factor for nonambulatory children, children who are technology dependent, or children who are overweight is a reasonable place to start in estimating calorie needs. Follow-up is the key to making sure that neurologically impaired children grow well. If a child is growing too fast, then calories can be decreased by 10%. Neurologically impaired children can have very low calorie needs, so it is important to monitor the intake of protein, vitamins and minerals, and electrolytes to ensure these stay at recommended levels despite a low calorie intake. Conversely, if a child continues to grow slowly, then calories can be increased by 10% with careful monitoring.


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  		Table 1. World Health Organization Equations for Estimating Basal Metabolic Needs36

 

Protein
Protein needs for neurologically impaired children are similar to the protein needs of unaffected children. The DRI for protein is adequate for this group of children. Increased protein is needed if decubitus ulcers are present. Problems with protein intake may arise when calorie needs are low. It may be difficult to provide adequate protein in tube-fed children who require a very low calorie intake to prevent overfeeding. A higher protein formula or a protein supplement should be used with these children.

Micronutrients
A retrospective chart review of 19 children with nonambulatory cerebral palsy receiving GT feedings of standard commercial formulas revealed that < 75% of the recommended daily allowance (RDA) for calories was administered to the majority (95%) of the children. These children ingested 58% of the RDA for calcium, 68% of the RDA for phosphorus, and 74% of the RDA for vitamin D.39


   Nutrition Assessment
Top
Nutrition Abnormalities
 Nutrition Requirements
 Nutrition Assessment
Management
 Ketogenic Diet
 Treatment of Bone Disease
 Summary
 
Nutrition assessment for a child who is neurologically impaired is similar to the assessment of an unaffected child. The interpretation of the information will vary. The assessment should include a review of the child's medical, family, feeding, and growth history, including anthropometric measurements.

Medical History
Medical history should include information about the etiology of the neurological impairment, the severity of the impairment, when the event occurred, and the expected outcome. It is important to know whether the condition is temporary, static, or progressive.

Medications should be reviewed. Medications for respiratory issues, reflux, constipation, drooling, or seizures may have an impact on appetite, bone health, and the child's ability to take in adequate nutrition. Children with neurological impairment can be at greater risk for osteopenia, especially children who are nonambulatory and those receiving medication for seizures or corticosteroids. An evaluation of vitamin D, calcium, and phosphorus intake should be conducted to determine if supplementation is needed.

Other aspects of the child's medical history that will affect nutrition status are history and frequency of emesis, chronic cough, or pain while eating. These may indicate GER or aspiration pneumonia.

Laboratory Studies
Laboratory studies should be included when necessary. In general, an extensive laboratory evaluation is not needed.4 There are, however, studies that should be done routinely. Serum calcium, phosphorus, and 25-hydroxyvitamin D levels should be checked because many neurologically impaired children are taking seizure medications that interfere with vitamin D metabolism, and many of these children are nonambulatory. Checking these levels will help determine bone mineral status and the need for supplements. A complete blood count and iron indices including a serum ferritin level are useful to determine whether anemia is present and if supplementation is needed. Serum levels of albumin and pre-albumin are often measured but do not correlate well with nutrition status in "healthy" children with cerebral palsy.40 Other laboratory tests that should be considered if the child is institutionalized, if the child is on elemental formulas, or if they are clinically indicated are zinc, selenium, vitamin E, linoleic acid, and triene-tetraene ratio.

Feeding History
Feeding history can give valuable information to the healthcare provider and help direct nutrition intervention. A child's inability to sit unassisted or to hold up his or her head can have a negative impact on the child's ability to eat and on nutrition status. Poor oral motor function and fatigue can also lead to poor intake and be a factor in suboptimal growth.29 An assessment of oral motor skills such as acceptance of types of textures, length of mealtime, and spillage are all important pieces of information. This information can be obtained through observation or interview. Intervening on any of these aspects can help increase calorie intake, but there may be a point when oral intake continues to be inadequate. A 24-hour diet recall or 3-day food record may be useful, but the healthcare provider should keep in mind that these can be inaccurate. Families often report how much food was offered, not what was actually eaten. Families may underestimate the amount of time it takes to feed a child.33 The information from a food record is helpful from a qualitative standpoint. It can give the healthcare provider a place to start when trying to increase a child's intake and to identify food preferences.

Growth History
Important elements of the nutrition assessment for a neurologically impaired child are growth, growth history, and anthropometrics. It has been shown that neurologically impaired children who have the best growth required fewer days of healthcare and missed fewer days of social activity than did the children with the worst growth.41 Growth may be a predictor of health status in children with special needs.

Physical Examination
A physical examination should be completed to look for signs of malnutrition and for physical findings that may interfere with oral or gastrostomy feeds. Looking at the child will also help with interpreting the growth data. Muscle tone, contractures, balance, and head control will all play a role in the child's ability to eat and should be observed. These factors can also influence energy needs. An examination of skin integrity is important because the presence of decubitus ulcers will influence energy, protein, vitamin, and mineral needs.

Anthropometry
Weight. Weight should be obtained on an appropriate scale. Infants should be weighed on an infant scale. Older children should not be weighed on an infant scale. If the child cannot stand on an upright scale, a bed scale, chair scale, or sling scale should be used. On many scales, the weight of a chair or stroller can be "zeroed out." This can be used when a child is unable to stand on a scale and none of the other types of scale are available.

Height/length. Measurements of height or length must be as accurate as possible. The same technique and equipment should be used at each visit. In a child younger than 2 years or a child who cannot stand, a recumbent length should be measured. Standing height, without braces or shoes, should be done on older children who are able to stand without crouching. In a neurologically impaired child, it is often difficult, if not impossible, to obtain reliable measurements of recumbent length or standing height.

Alternate measure of length. Many children have knee, hip, or ankle contractures or are unable to stand. Alternatives or "proxies" to recumbent length and standing height should be used if standard measurements cannot be obtained. Upper arm length, lower leg length, and knee height have all been shown to be reliable proxies.42 These can be plotted on corresponding charts or converted to an estimated height using corresponding formulas.42 For children with neuromuscular disorders such as Duchene's muscular dystrophy, an arm board measurement can be used.43

Growth charts. Growth information should be plotted on the appropriate growth chart. There are different growth charts that can be used to track specific populations, such as Down syndrome, Prader-Willi, Williams syndrome, and Cornelia de Lange.44-47 If a population-specific growth chart is not available, the height should be plotted on the appropriate Centers for Disease Control chart.48 A recumbent length should be plotted on a birth to 36-month chart. Standing height should be plotted on the 2- to 20-year-old chart. In the case of a recumbent length on an older child, it should be plotted on the 2- to 20-year-old chart as should all the height proxies. Cerebral palsy growth charts do exist but should be used with caution.49,50 Some of the first charts were created by Krick et al for children with quadriplegia.49 These charts were based on repeated measurements on a limited number of children. Feeding method and muscle tone were noted, but the charts were not stratified according to these categories. The most recent CP growth charts were developed by Day et al.50 These charts have been stratified by severity of disability, based on the child's feeding ability and motor function. The authors indicate that these charts represent large numbers of patients, but they do not necessarily represent the ideal or healthy weight for children in these different groups. The authors of the study also indicate a need for caution when using the height charts secondary to the difficulty with obtaining height measurements.

Upper arm anthropometrics. The TSF is an important tool in the nutrition assessment of a child who is neurologically impaired. It appears to be a better predictor of nutrition status than height and weight percentiles. Samson-Fang and Stevenson found that weight and height percentiles were poor predictors of nutrition status; TSF was the best predictor.51 The TSF is an easy measure to obtain, the calipers are affordable, and the information is reproducible. A TSF of less than the 10th percentile for age and gender is an indicator that further intervention may be needed. A midarm circumference may also be used to follow nutrition status.

Feeding Evaluation
Evaluation of a neurologically impaired child's ability to eat is an important part of the nutrition assessment. Meal observation may be useful in this process, as eating impairment in these children can range from mild to severe. Meal observations often show that neurologically impaired children are offered less, consume less, and spill more food than do unaffected children fed for the same period of time. Also important is the interaction between child and caregiver during meal times. Meal times may not be enjoyable, and parent-child interactions may be poor during the meal.27

Other Tests
When symptoms of feeding intolerance are present, or if permanent enteral access is being considered, additional investigations may be helpful. Video fluoroscopy of swallowing function with a variety of food and beverage textures will assist in determining level of dysfunction and risk for aspiration. These studies may also reveal silent aspiration without a history of choking and coughing with meals. The video fluoroscopy should be performed by experienced staff (speech pathologist and radiologist), with the child positioned as he or she usually eats meals at home. Duration of the study should be similar to meal times at home, as fatigue may result in aspiration. The swallowing study will also determine which textures are appropriate for each child. The speech or occupational therapist should provide recommendations for feeding based on study results.

Gastroesophageal reflux can be diagnosed clinically in many children. If indicated, a 24-hour esophageal pH probe study will help to confirm presence of acid reflux. Gastric emptying scans may detect gastroparesis, GER, and aspiration. An upper GL series may detect esophageal or gastric dysmotility or anatomical abnormalities, including malrotation and superior mesenteric artery syndrome. Upper GL studies may also reveal abnormalities that should be considered in enteral access placement.

A chest radiograph and assessment by a pulmonologist should be a part of the evaluation in children with symptoms of chronic aspiration, in particular when placement of enteral access is considered. As part of the workup, oxygen monitoring during meals may reveal hypoxemia while eating foods of specific textures.

Nutrition Assessment Summary
Growth assessment in neurologically impaired children is an important indicator of health. As stated earlier, Stevenson et al found that neurologically impaired children who grew and gained weight well required fewer healthcare days and missed fewer days of social activity.41 Samson-Fang et al showed a correlation between malnutrition in this population and increased use of healthcare and decreased participation in social activities.52 Therefore, monitoring nutrition status with weight gain, length, growth, and TSF—and intervening when children are not growing well to prevent malnutrition—is warranted. There are no set standards of interpretation of growth data for children who are neurologically impaired. A review of all clinical data including weight, height, TSF, medical history, and physical examination is needed. A review of growth trends is very useful. It is not necessary for a neurologically impaired child to have a weight at the 50th percentile. The child whose growth is "tracking," or following a curve either on the chart or just below the curve on the Centers for Disease Control and Prevention growth chart and a TSF at the 10th percentile, may be doing very well. A child with a weight at the 50th percentile but with a height at or below the 5th percentile would be overnourished. It may be more difficult to care for a child who is too heavy. Body mass index (BMI) by itself may be of limited use in this population. An accurate height is needed to calculate BMI. Limitations with height measurements have been discussed earlier in this article. The BMI does not tell the healthcare provider any information about fat mass or muscle mass, and this limits its usefulness. If a child is below the 5th percentile but gaining weight and growing appropriately, he or she should be considered well nourished.

If a child has poor weight gain and low nutrition indicators, then intervention should be undertaken. If the child eats by mouth, then the first intervention would be to try to increase intake by concentrating calories, improving feeding skills, and improving eating. If the child gains weight and grows well, then follow-up in 6–12 months would be appropriate. If the child is unable to gain and grow with intervention by mouth, then discussion of tube feeding should be started with the family. If the intervention is thought to be short term, a nasogastric tube could be considered. If the intervention is to be long term, then a GT should be considered. Estimating calorie needs can be difficult because most equations seem to overestimate calorie needs. We suggest the World Health Organization equation as the method of choice. Regardless of how the calorie needs are estimated, the healthcare provider must monitor weight gain to ensure that the child is not overfed.

If a child is gaining weight too quickly and nutrition indicators are high, then intervention should be undertaken. If the child eats by mouth, then access to high-calorie food should be decreased. Families should no longer give supplements or concentrate calories in the foods offered to the child. If the child is tube fed, then calories should be reduced.


   Management
Top
Nutrition Abnormalities
 Nutrition Requirements
 Nutrition Assessment
 Management
Ketogenic Diet
 Treatment of Bone Disease
 Summary
 
After a thorough evaluation by a multidisciplinary team (physician, dietitian, speech therapist, physical therapist, and occupational therapist), nutrition intervention should be planned to provide appropriate care for the neurologically impaired child. An individualized plan should be determined that considers the patient's nutrition status, feeding abilities, medical condition, activity level, and family situation. The goal should be to achieve the child's genetic growth potential within limits of the neurologic condition and maintain adequate nutrition status. Nutrition support should be provided by the enteral route rather than the parenteral route when the GL tract is functional. Nutrition intervention should be considered when evidence of malnutrition and/or growth failure is present or, at times, when individual nutrient deficiencies are present. Oral feeding should be maintained in children with adequate oral motor skills who have a low risk of aspiration. Once calorie needs have been calculated, the method for providing nutrition must be determined. Children who cannot maintain their caloric needs orally should receive tube feedings. Enteral feeding in the neurologically impaired child requires decisions about nutrient requirements; the type, route, and method of formula administration; feeding intolerance; and ethical considerations.3 The discussion of tube feeding can be difficult at times. Parents often resist the institution of tube feeds for a variety of reasons, including lack of control, feeling of failure, and cultural reasons. The decision to start tube feeds must be approached with understanding and compassion, and in most cases, parents eventually agree to their use.

Route of Feeding
The oral route for feeding is the preferred route of feeding. The occupational therapist should assist in the nutrition intervention of orally fed children with neurological impairment, determining correct positioning and the use of appropriate chairs and adaptive utensils during meals. Thickening of feedings can be used in patients who have evidence of penetration or aspiration when swallowing thin liquids. Children who aspirate with liquids but not with solids are permitted to eat solids orally but receive all liquids via a feeding tube, usually a GT. Feeding therapy may be useful to improve oral motor skills, especially before age 5 years. Oral feeding interventions may be helpful in enhancing oral motor function but are not effective in promoting feeding efficiency and weight gain.53 Progress with oral motor therapy may be limited.54 Enteral tube feedings are mandatory in children with neurological impairment who cannot meet their nutrition needs by oral feeding alone. Oral feeding is inadequate when weight gain and linear growth are not supported, the amount of time required to feed the child is excessive, or aspiration risk is present.

The route of tube feeding depends on the anticipated length of therapy and clinical status of the patient. The least invasive approach is enteral feedings via a nasogastric tube. Indications include duration of tube feeds for 6 months or less, the need to assess tolerance to feeds before placement of a GT, and if nutrition repletion is required before surgery or GT placement. If the duration of feeds is expected to last for more than 6 months, then a GT should be placed. A GT can be placed percutaneously by a gastroenterologist or interventional radiologist or surgically by a surgeon. The indications for a surgical GT include a history of previous abdominal surgery, severe scoliosis, hepatosplenomegaly, ascites, and the need for an antireflux procedure such as fundoplication. All other patients can have their GTs placed percutaneously. Placement of a GT in patients with swallowing and feeding problems who do not have severe GER usually results in weight gain and improved quality of life for the patient and the caretaker. If GT is placed within the first year of life, most children will grow onto the growth chart.55 If aggressive nutrition intervention starts 8 years after the initial neurological insult, improvements are seen in weight for age but not in length for age.14 Complications of GT placement include failure of placement due to anatomical abnormalities, gastro-colic fistula, GT site granulomas, leakage of feeds at the GT site, increased GER, feeding intolerance, and site infections. Patients with surgical GT may have a pyloroplasty done because of delayed gastric emptying. Dumping syndrome can be seen in these patients. Retching and feeding intolerance can be difficult problems to manage after a fundoplication. Some patients with severe GER, feeding intolerance, and esophageal and gastric motility disorders may need a nasojejunal feeding tube while waiting for a more permanent feeding tube. These tubes are hard to maintain and are frequently dislodged. Gastro-jejunal tubes are indicated in patients who have severe GER and who do not tolerate GT feeds, and these patients are poor candidates for a fundoplication. Marchand and Motil have presented an excellent discussion of tube feeds in children with neurological impairment.3

Tube feeds can be the sole source of nutrition or supplements to oral feedings. They can be administered as bolus feeds, as continuous feeds, or as a combination. In general, bolus feeds are preferred because they are more physiological and more convenient to administer. Continuous feeds are used when large volumes of feeds are required, patients cannot tolerate bolus feeds, nighttime administration of feeds is indicated, and when using jejunal tubes.

Type of Diet Including Formula
For orally fed children, several options can be tried to increase caloric intake if this is indicated and appropriate. Caretakers are encouraged to add fats, dry milk powder, or cream to foods to increase caloric density of the diet. Modular products (medium-chain triglyceride oil, vegetable oils, glucose polymers) may also be added to increase caloric intake. Families are also counseled to offer oral supplements. A variety of acceptable, nutritionally balanced commercial supplements is available in both a milk and juice base. Taste is the primary consideration in choosing a supplement, and preferences are individual to the child. Detailed advice on methods to increase nutrient density of foods is available in publications addressing care of children with special healthcare needs.56,57 It is essential that the patient be evaluated by a registered dietitian and an appropriate plan developed. Once a specific dietary plan is instituted, the child should be monitored closely for weight gain and change in skinfold measurement.

In cases in which tube feeding is required, an intact standard formula for age can usually be used. Patients with delayed gastric emptying may benefit from a whey-based formula.58 Patients with allergies may need protein hydrolysate formulas or amino acid–based formulas. Energy-dense formulas (1.5 or 2 cal/mL) may be required for patients who are fluid restricted or volume sensitive. It is important to make sure that the patient's fluid needs are being met and that patients get enough free water. Fiber-containing formulas may be used in patients with constipation, but these sometimes cause bloating and feeding intolerance. Some pediatric patients may need adult formulas. In these cases, care must be taken to ensure that excessive protein intake does not occur and that the patient's micronutrient needs are being met.

Patients can develop feeding intolerance on tube feeds. Symptoms include the new onset of GER or increase in preexisting GER, vomiting, aspiration, retching, gagging, abdominal pain, distension, dumping, constipation, diarrhea, and increased gas. The approach to feeding intolerance may include changing to continuous feeds, decreasing bolus size, concentrating the formula, changing the formula, treating GER, changing the route of feeding, or surgery.

Use of Homemade Tube Feedings
Homemade tube feeding is food that has been liquefied in a blender and bolus fed through a GT. These types of feedings were used for many years before the development of commercial, standardized, and, ideally, sterile enteral products. Some families continue to express an interest in using homemade tube feedings to replace all enteral feeds or to serve specific foods or meals.59

The safe and effective use of homemade feedings has not been reported in peer-reviewed publications. These types of feedings were used for many years before the development of commercial, standardized enteral products. Reasons families may choose homemade tube feedings include (1) lower cost for those of limited financial resources/limited insurance support; (2) perceived health benefits from providing a variety of foods, including those naturally high in fiber to support GL function; and (3) psychosocial considerations in that providing homemade tube feedings allows the child to be nourished by and participate in meals prepared at home.60,61 Contraindications for use of homemade tube feedings include (1) acute illness or immunosuppression, (2) GT size < 10 Fr in place (> 14 Fr is preferred to prevent clogging), (3) fluid restrictions or intakes less than 30 oz/d, (4) continuous drip feedings requiring a tube feeding unrefrigerated for more than 2 hours, (5) jejunostomy tubes requiring continuous feeds, (6) multiple food allergies/intolerances or special diet restrictions, and (7) lack of resources for the family, including electricity, refrigeration, hot water, or other needed supplies.59 Concerns regarding safety of home use of tube feeding appear in the literature.62 Contamination of feeding sets can occur even with the use of commercial feedings. Special care and clean technique are very important and even more important when feedings are made from foods prepared and kept at home.

Families that plan to use homemade tube feedings require support from a registered dietitian. Composition of the mixture should be closely analyzed for adequacy of all macronutrients and micronutrients. A computer analysis of the formulation is recommended for all tube feedings if used as a sole source of nutrition. Energy needs should be met but not exceeded in planning these feedings. Tolerance should be evaluated as with any enteral product. Close monitoring for tolerance and outcome of the feeding plan is needed.


   Ketogenic Diet
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Nutrition Abnormalities
 Nutrition Requirements
 Nutrition Assessment
 Management
 Ketogenic Diet
Treatment of Bone Disease
 Summary
 
The ketogenic diet has proven to be effective treatment for some children with intractable seizures. The diet, with a composition of 80% fat, may be provided through an oral diet or tube feeding. Rationale for the ketogenic diet is that increased levels of ketones may reduce seizure activity. The use and efficacy of the ketogenic diet are described in detail in the article "An Overview of the Ketogenic Diet for Pediatric Epilepsy" in this issue of Nutrition in Clinical Practice.63


   Treatment of Bone Disease
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Nutrition Abnormalities
 Nutrition Requirements
 Nutrition Assessment
 Management
 Ketogenic Diet
 Treatment of Bone Disease
Summary
 
There are few well-conducted clinical trials looking at optimal treatment and prevention of bone disease in the neurologically impaired patient. In general, it is recommended that calcium, phosphorus, and vitamin D intake be optimized64,65 and serum levels be normalized. This may result in improved BMD and a reduction in fractures. In addition, increasing ambulation and weightbearing when possible, optimizing nutrition status, and ensuring that puberty occurs on time have been suggested as important adjunct measures.66

There have been a number of studies describing the use of bisphosphonates in children with cerebral palsy. Most of the studies have described the use of intravenous rather than oral bisphosphonates because of the feeding problems and GER that these patients may experience. Improvements in BMD (up to 89% over 18 months) in the spine and femur, reduction in fracture rates, and decrease in bone pain have been noted.67,68 No side effects have been seen in these studies.69,70 The long-term effects of bisphosphonates are not known in the growing child let alone in the child with neurological impairment. Caution must be exercised in the choice of patient, and a discussion with the family regarding the risk-benefit ratio should take place. The effects of increased standing and whole body vibration on BMD71 have also been studied. It has been suggested that to prevent osteoporosis in children with cerebral palsy, it is important to maintain ambulation and weightbearing activities; ensure adequate calcium, vitamin D intake, and general nutrition status; and ensure timely pubertal development.


   Summary
Top
Nutrition Abnormalities
 Nutrition Requirements
 Nutrition Assessment
 Management
 Ketogenic Diet
 Treatment of Bone Disease
 Summary
 
Nutrition is an important component in the care of the child with neurological impairment. Improved health outcomes and quality of life are linked with improved nutrition status. A multidisciplinary team including a registered dietitian can provide optimal evaluation and follow-up. Monitoring the child's nutrition status over time allows for adjustment of the nutrition regimen according to the child's needs. It is important to include the family in all decision making and to form a partnership with family. Care guidelines adapted from the 2006 report by the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition, and summarized in Table 2, can serve as a ready reminder of the major considerations in the nutrition care of neurologically impaired children.


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  		Table 2. Recommendations for Nutrition Care of the Neurologically Impaired Child3

 


  
Top
Nutrition Abnormalities
 Nutrition Requirements
 Nutrition Assessment
 Management
 Ketogenic Diet
 Treatment of Bone Disease
 Summary
 
Financial disclosure: none declared.

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Nutrition in Clinical Practice, Vol. 23, No. 6, 597-607 (2008)
DOI: 10.1177/0884533608326228
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