Author: Sharon Wallace, RD, CSP,CNSD, LDN
TR is 17 month old (corrected for prematurity) boy with spastic diplegic cerebral palsy and frequent, intermittent loose stools. He has completed swallow studies on 2 occasions (most recently within the last 6 months), which indicate he is at high risk for aspiration and therefore, receives all his nutrition through gastrostomy-tube feedings.
Growth Parameters: Weight: 17# 15 ounces (<<5th% on CDC growth charts), Length: 26/12 inches (<<5th%), Head circumference: 48.5 centimeters (<<5th%), weight for length: 50-75th%
Feeding Regimen: 20 calorie per ounce Nutramigen? at 65cc per hour x 18 hours via feeding pump. This equals 1170 cc (150cc per kilogram), 795 calories (100 calories per kilogram) and about 20 grams of protein
He was initially seen by a Registered Dietitian (RD) at the request of his Medical Doctor (MD), for an evaluation of his failure to thrive, and the goal was to increase calories to help him gain weight.
Upon evaluation of TR's growth chart, the RD determined that, although his growth parameters were all less than the 5th%, he was following a steady curve below the 5th% for both weight and height and had a weight and height age of 6 months. His weight for height was 50-75th%. The RD explained to the MD and family that with his diagnoses and decreased movement, a lower amount of calories was needed to maintain his nutritional status.
TR's formula was then discussed with his parents and MD. It was noted that he had remained on this formula since 6-8 months of age, since it seemed to limit his loose, foul smelling stools. The volume had not been changed in about 6 months. They did note that they wished he could receive his feedings in less time so the family could have more flexibility in their schedules.
Various formula options were discussed, and it was decided to try Peptamen Junior ?. Options for feeding regimens were discussed and it was decided to try a short transition period of ? Peptamen Jr? and ? Nutramigen?, as the parents were worried about his increased stool output returning. If this was tolerated, the RD showed the family how to transition to all Peptamen Jr? and adjust the volume to meet calorie needs. A 3 month follow-up appointment was made.
Mother called the RD about 1 month later, worried that TR was "beginning to look too fat." Upon inquiry, it was discovered that the formula was changed to Peptamen Jr, but the volume had mistakenly not been adjusted and he was receiving a rate of 65cc per hour (1170cc-1 calorie per cc in this formula= 1170 calories (150 calories per kilogram!). The volume was decreased to 600 cc per day (2.5 cans) to run over 10 hours at 60cc per hour as this would still provide optimal nutrition for TR without running the risk of increasing his wt/ht further. An additional 6-8 ounces of water was flushed into the tube over the course of the day.
When the family returned for the 3 month appointment, they were pleased with TR's tolerance to the Peptamen Jr and really enjoyed having him free of the pump for 8 more hours each day. He had had no increase in stool output with the change of formula and so, they discussed the possibility of using bolus feeds in the near future to allow TR and his family even more freedom from the pump.
TEACHING POINTS
1. Growth must be carefully assessed in children who have cerebral palsy (CP). It is easy to overestimate nutrition needs with this population, especially if weight is lagging behind on or below the 5th%. It is important to note that, in most cases, a child with CP will not demonstrate the "normal growth" of a non-disabled child. Growth velocity (how the child is growing over time)must be examined instead of using individual plots.
2. Weight for Length is a useful parameter to use and sometimes a better indicator of nutrition status in this population. Depending on the medical situation, wt/ht of 10-25th% may be more ideal than the 50th% and higher. A weight for length greater than the 50th% may represent excess adiposity, as muscle tissue weighs more than fat, and these children tend to have lower muscle mass because of immobility. With the recently revised growth charts from the CDC, Body Mass Index (BMI) can be measured in children > than 2 years of age, which can monitor changes in body fat and follow the risk for obesity.
3. Diarrhea is a common complaint-often the formula is "to blame" and is switched. Over time, this can lead to a long chain of formula changes, which can be frustrating, confusing and expensive for the family. There are many potential sources for diarrhea including medications, underlying illness, and infection to name a few. At times, the volume of formula or the rate at which it is given may be too great for an infant or child to tolerate. In these cases, appropriate adjustments can often alleviate this problem.
4. Estimating nutrition needs for the child with CP can be challenging. Below are the three most common methods used-note the variance between them for this patient.
RDA for age = 100 calories per kilogram=770 calories per day
CP and length equation = 11.1 cals per centimeter of height (for restricted movement)=733 calories
** note that obtaining accurate heights on these children can be challenging, esp if they have contractures**
Basal Metabolic rate with activity factor: 17.1 cals per hour * 24 hours=410 cals basal rate
Add factors in for growth, activity level and level of tone=600 calories per day
This RD's experience has found that the third equation tends to better estimate calorie levels for this population than the RDA.
5. Each child will respond differently to formulas. Nutramigen is a formula that has a hydrolysate protein (meaning pre-digested), so it should not be as difficult to absorb. The carbohydate is also broken down into an easier digestible form. However, the fat in this formula is primarily long-chain fats, which are found in most standard baby formulas and breastmilk. These can sometimes be hard to digest and can cause persistent diarrhea. Formulas containing a fat called MCT oil (medium chain triglycerides) are often tried. These fats do not need the body to help them as much to digest as long chain fats do. The decision to try TR on Peptamen Jr was based on
a. It is more age appropriate than an infant formula and a better balance of protein, calcium, iron and other vitamins and minerals for his age
b. It was more calorically dense (30 calories in each ounce versus 20), so he could receive his nutrition in a shorter time frame
c. The protein in Peptamen Jr is called a whey peptide. This is theoretically easier to digest as it "empties" from the stomach faster than other proteins. The fat is 60% MCT, so this should help keep loose stools under control.
In TR's case, this was an optimal choice, as he continued to grow well, had fewer episodes of loose stools, and his family enjoyed the freedom of fewer hours on the pump.
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