Nutrition and growth in children with CP

Overview
Undernourishment is present in 40-60% of children with CP. [Henderson: 2007] For children with moderate to severe cerebral palsy, feeding dysfunction is common and associated with poor health and nutritional status. Even children with only mild feeding dysfunction, such as those requiring chopped or mashed foods, may be at risk for poor nutritional status. [Fung: 2002]

It is difficult for Medical Home providers to spend much time assessing and treating problems with eating and nutrition in children with CP due to increasingly hurried schedules. Families may not be covered by their insurance for consultation with nutritionists, and may not be able to afford visits on their own. In one study, approximately 40% of parents of children with moderate and severe neurological impairment considered their children to be malnourished, but more than half of these children had never been assessed for nutritional status and needs. [Sullivan: 2000]

The discussion of nutrition in children with CP is a sensitive topic for many families. Terms used by medical providers, such as failure to thrive, may add to feelings of inadequacy and poor parenting. Although parents sometimes spend hours each day trying to get enough food into their children with CP, many parents still have a negative reaction when the possibility of a gastrostomy or nasogastric tube is first raised. [Namerow: 2003] Parents may not think of tube feeding as "eating" ([Petersen: 2006]) and for various reasons including the "unnaturalness" of tube feeding and psychosocial concerns, may persist with oral feeding even in the face of stressful, frankly unenjoyable mealtimes [Sullivan: 2000] and instructions by a physician to provide nothing by mouth. [Petersen: 2006]

As problems with weight may challenge parents' perceptions of their effectiveness, weight gain and growth are best addressed early and routinely. Initial preventive/treatment steps should be taken in the primary care setting, with intermittent support from a nutritionist. If problems with nutrition don't respond to primary care intervention, referral to an specialist in nutrition management in this population is important. Common problems include:

• malnutrition and undernourishment due to difficulty eating and swallowing
• inadequate micro-nutrients, such as calcium, even with tube feedings [Hillesund: 2007]
• high energy expenditure
• failure to grow properly

Evaluation Challenges - One reason that undernourishment may not be addressed adequately is difficulty with an uncommon evaluation in the midst of a busy pediatric practice. Challenges include:

• Weight-for-height percentiles and body mass index may not be adequate to assess under-nourishment. [Fung: 2002]
• Standard measures of nutritional status, such as serum albumin and prealbumin, are not reliable in this population. Even in the face of severe chronic malnutrition, the majority of children with CP maintain normal levels of serum albumin and prealbumin.
• Parents of children with CP consistently 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.

Assessment Tips - for the child with CP include:

• Measure weight and length/height consistently and watch for trends: (weight gain, linear growth, does the child lose ground with every illness?)
• Measure fat stores, if you have a skinfold caliper, or refer to a nutritionist.
• Perform segmental measurements (e.g., tibial length). Extrapolating segmental measures provides a reasonable estimate of height that can can be plotted on a standard growth curve. See Tools below.
• If nutritional status is deemed optimal but the child continues to have poor growth velocity, evaluate for growth hormone deficiency.
• 10-25% weight for age acceptable in nonambulatory children.

Determining Nutritional Needs

• Determining energy needs may be complicated in children with cerebral palsy due to decreased physical activity and decreased caloric need in some children and increased caloric need due to the presence of spasticity, constipation, drooling, and/or excessive sweating in others.
• Adolescents, particularly, with athetoid or spastic cerebral palsy may need 5000 to 6000 kcal/day to meet caloric needs.
• The multidisciplinary involvement of feeding specialists, who may be occupational or speech therapists depending on location, gastroenterology and/or pediatric surgery for consideration of tube placement, and nutrition is suggested.

Feeding Methods

• Families will often prefer oral feeding over tube feeding, even if it takes a long time and require additional preparation. Sometimes it helps to bring up the possibility of a feeding tube at one visit, discuss the positive and negative ramifications of the decision, and allow the family some time to consider the idea.
• A systematic Cochrane review of gastrostomy tube in CP does not support either tube or oral feeding over the long term. The authors of the study point out that a controlled long-term study is indicated. [Sleigh: 2004]
• Families often don't realize how long they spend preparing and feeding their child with CP - estimates are 3.5 hours a day spent feeding a child with CP and swallowing problems vs. 0.8 hours/day for time spent feeding typically developing children. Families who have opted for tube feeding often report an improved quality of life due to a reduction in feeding times, improved medication administration, and decreased worries over their child's nutrition. [Sullivan: 2004]
• If malnutrition is present, oral feeds, even with nutritional supplementation, are rarely enough to resolve it. Sometimes however, a period of tube feeding (nasogastric or gastrostomy tube) supplementation may allow the child to catch up to a normal weight and then continue with oral feeds alone.
• Percutaneous placement of a gastrostomy tube or gastrojejunal tube is recommended if the child will require tube feeding for more than about six weeks. These are readily removable when no longer necessary.
• The child with a temporary feeding tube can be fed by tube at night, allowing hunger and thirst to occur during the day so that oral feeding can continue. This may also be a time that oral-motor skills to improve oral feeds may be optimized, allowing a better transition back to oral feeding.
• In some children, tube feeding may be necessary due to frequent coughing, choking, and aspiration. Even if maximum efforts are made to prevent aspiration of food and drink into the lungs with a gastrostomy tube and Nissen fundoplication, oral secretions may still be aspirated.

Tube Feeding Formulas

• When tube feeding is required, a nutritional consult is recommended. There is little information about nutritional needs of children with moderate and severe CP, but there are several instances where tube feeding with caloric guidelines for typically developing children may not be adequate.
• As noted above, children with severe disabilities may have complicated energy requirements.
• The use of formulas designed for adults, even in older children, with a set amount of nutrients per unit of energy may lead to an inadequate amount of minerals and trace elements when the child does not get a large amount of formula due to decreased energy need. Formulas designed for children such as Pediasure which has a higher ratio of micronutrients to energy units may be necessary.
• Calcium and vitamin D intake should be optimized to prevent development of osteoporosis in non-ambulatory children.
• Overweight needs to be monitored for with adjustments in formula to water intake adjusted as needed. [Sullivan: 2006]