Dietitians at SSM Cardinal Glennon Children’s Hospital are involved in the care of every in-patient and many out-patients. Nutrition is a central issue in many diseases that prevent children from absorbing or metabolizing certain foods. Specifically-designed diets are a foundation of the treatment plan for other illnesses and injuries.

For still other patients, medical care is needed simply because they are unable to eat normally or consume too much or too little.

“Nutrition is critical to healing, to everything the body needs to do,” said Chris Ohlemeyer, M.D., director of adolescent medicine at Glennon.

Brad Gould, 18, has been a Glennon patient since he was two years old. He was born with phenylketonuria (PKU), a potentially devastating genetic metabolic disease that prevents the body from handling some proteins.

Through monthly blood tests and consultations with his physician and dietitian at Glennon, Brad has led a normal, active life. Last spring he graduated from Duchesne High School in St. Charles. This fall he entered classes at Rockhurst University in Kansas City.

“My mom always says, without a dietitian you really don’t know what to do with PKU,” he said. “You really need someone to tell you.”

Glennon employs eight dietitians and two dietetic technicians. Each dietitian works in one or two fields of patient care and they must earn a four-year college degree, gain qualifying experience and pass a registration examination before entering the field. While dietetics evolved out of the home economics field, it now requires education in scientific subjects such as organic and inorganic chemistry, biochemistry, microbiology, anatomy and physiology. Dietetic technicians have completed a two-year degree program and handle nutrition screenings, formula preparation instructions, diet education and computerized nutrient analyses.

“Pediatric dietetics is a specific area to begin with, and we each have our own specialty within pediatrics,” said Beth Piper, M.N.S., R.D., L.D., the hospital’s lead dietitian.

Each patient admitted to Glennon undergoes a nutrition screening that evaluates height, weight and laboratory test values that can indicate a nutritional or medical problem. Out-patients may also be referred for nutrition assessment and counseling by dietitians. Dietitians devote a considerable amount of time to patients whose treatment includes a nutritional component.

Pediatric nutrition may be more challenging than adult care due to the importance of maintaining growth and development through recovery periods.

Piper’s practice area is genetics. “I work specifically with the metabolic patients who have a missing enzyme that keeps them from digesting a certain component of food. They need a modified diet because of their deficiency,” she said.

Two of the most common genetic metabolic diseases are PKU and galactosemia, which involves the metabolism of carbohydrates in milk products. Children who have these diseases but do not follow rigid dietary regimens can acquire developmental and behavioral problems or permanent brain injuries.

Piper provides education and nutritional planning for families, including the Goulds, who have children affected by metabolic diseases. The diets may involve specially-formulated products.

“These diets are extremely tough and require a tremendous amount of willpower,” Piper said. “We give them lists of foods they can and cannot eat. If they follow their diet, they do great. They can have a completely normal life.”

Genetics patients with metabolic diseases are followed throughout childhood and adolescence and visit Glennon for regular examinations and lab tests.

Nancy Lawson, R.D., L.D., counsels patients affected by renal and gastrointestinal diseases.

“When children have kidney failure, we may have to put them on a special formula or diet because they can’t have too many electrolytes like sodium, potassium and phosphorous,” she said. “Children with renal failure also may have a suppressed appetite, so we have to look at ways to keep up their nutrition to maintain their growth.”

Kidney patients who do not follow the low-electrolyte diet can experience heart malfunction and possibly cardiac arrest.

Children who receive kidney transplants then face a new set of issues, Lawson said. “Their immune-suppressive drugs and other medications affect their cholesterol levels and their weight, and sometimes their height. The medications can increase their appetite, so we work with them on following a healthy diet.”

Lawson often participates in the care of gastroenterology patients troubled by gastroesophageal reflux — difficulties in keeping down formula, breast milk or food.

“We often see infants with reflux,” she said. “If they are vomiting their formula or breast milk, how do we get enough nutrition in them? They will have a decline in growth if we don’t.”

Due to allergies and other complications, the stomach can produce too much acid and cause the patient to spit up food after eating, she said. Some foods may cause a patient to experience unusual pressure in the stomach that forces the esophageal sphincter muscle to open.

“Sometimes medication will help them keep their formula or breast milk down,” Lawson said. “For older kids, we may use a gastroesophageal reflux disease diet that is low in fat. Fat can sit in the stomach and delay emptying.”

“The science of the interaction of food and the body is so interesting,” she said. “Nutrition is intertwined with all of the body’s functions.”

Silvia Carnes, R.D., L.D., CDE, participates in the care of one of Glennon’s largest patient populations, those with diabetes.

“In children with Type 1 diabetes, the pancreas produces little or no insulin, which is the key to allowing glucose to enter the cells and provide energy for work, play and growth,” said Carnes, who is a certified diabetes educator. “Carbohydrate is the main nutrient affecting our blood glucose level, as 100 percent of it is converted to glucose.”

Diabetes is treated through a coordinated regimen of insulin injections, individualized meal planning, blood glucose monitoring and physical activity. “All four have to be managed to keep blood glucose levels in a target range to prevent diabetes-related complications,” Carnes said.

Diabetes patients must measure and control the consumption of carbohydrates — such as starches, fruit, milk, yogurt, sweets and snacks — to match their insulin doses and keep their blood glucose within range.

“We teach the patient and the family how to count carbohydrates and how to follow a consistent carbohydrate meal plan,” she said. “They can incorporate a variety of healthy carbohydrate choices in their meals and snacks, but they have to look at serving sizes and make choices to keep their blood glucose level under control.”

Children with diabetes are followed at Glennon to adulthood. Their treatment and meal plans evolve throughout life in step with age and activities.

“As they become teenagers with work and school schedules, our endocrinologists can offer to switch them to an insulin regimen that better accommodates their busy lifestyle,” Carnes said.

“Our goal is to keep our kids growing healthy and strong. We have a great diabetes team teaching families how to take control of their child’s diabetes and lead a normal, active life and not let diabetes control them.”

Cystic fibrosis is a genetic disease that affects the lungs as well as the patient’s nutrition.

“In most patients with cystic fibrosis, the pancreas doesn’t secrete enough enzymes for normal digestion and absorption of nutrients, mainly fat,” said Natalie Moretz, M.S., R.D., L.D., who cares for these patients.

Patients with cystic fibrosis are given enzymes that help them digest and absorb nutrients and are placed on a high-calorie diet that attempts to overcome their body’s lack of normal absorption.

“This is the opposite end of the spectrum in nutrition. We’re trying to beef them up by offering them all these high-calorie, high-fat foods. Typically we’ll give them 130 to 150 percent of the recommended dietary allowance for their age group,” Moretz said. “Then we have to see whether they can take in that volume. Even if they are eating a lot of high-calorie foods, their stomach may not be able to handle the volume.”

Nutritional supplements and drinks often are added to the diets of cystic fibrosis patients. Some may receive additional formula overnight through a tube placed into the stomach if they are unable to gain weight on a regular diet.

Glennon provides continuing care for nearly 120 children and teens with cystic fibrosis.

“We want them to be growing as close to the normal growth curve as possible,” Moretz said. “Good nutrition gives the body the stores it needs to be as healthy as it can be. Recently published data suggest that patients with cystic fibrosis who are better nourished grow better, have better pulmonary function and live longer.”

Energy for Recovery

For many patients at Glennon, nutrition must provide the strength to fight disease or recover from injury.

In addition to her work with genetics patients, Beth Piper also counsels patients being treated for cancer. “A lot of these kids don’t eat well when they are in the hospital because they lose their appetite,” she said. “I always look at their weight to make sure they are at least stable and not losing too much during their treatment. I work with them to find things they will eat or supplements to add calories to their diet.”

The hospital’s dietitians often are referred patients whose diseases force their heart or lungs to work harder and burn more energy.

When patients are very seriously ill, intravenous or tube feedings may be necessary to provide all the energy and nutrients that are needed.

Karen Weaver, M.S., R.D., L.D., and Rita Chrivia, R.D., C.S.P., L.D., care for patients in Glennon’s intensive care units, where IV or tube feedings may be needed for long periods.

“Most of these kids are not eating, so we are making sure they are still fed properly so they will have a quicker recovery. We try to get them up to their maximum feeds as quickly as possible,” said Weaver, who works with the pediatric intensive care and transitional care units and has been part of the Glennon staff for 20 years.

Dozens of formula products are available for patients who must be fed through a tube. Feeding tubes can be routed through the nose and into the stomach or, for patients who will need them for longer periods, through a button surgically placed on the abdomen.

“A tube feeding product contains your complete nutrition in a liquid form,” Weaver said. “They have vitamins, minerals, protein, fats and carbohydrates.”

For patients who cannot eat regular food or tolerate tube feedings, intravenous solutions prepared in the hospital pharmacy are introduced directly into the patient’s blood stream, Weaver said. “We bypass the absorption process in the stomach. The nutrients are metabolized as if they had come from digested food.”

Feeding formulas are selected according to the patient’s age, disease or injury and stage of recovery. Standard formulas can be modified to more precisely fit a patient’s needs.

“A trauma patient will need higher protein and higher nitrogen initially,” Weaver said. “After their body gets out of shock, their metabolism changes and they go back to what a normal kid needs. If they are in a prolonged state of lying in bed on a breathing ventilator, their needs may go down a little bit. We don’t want to over-feed or under-feed at any stage because this results in infection or stress to other organs. This requires close monitoring of blood tests and their response to medical treatments.”

Premature babies have enormous nutritional needs but can handle just a tiny volume of food, said Chrivia, who is assigned to Glennon’s neonatal intensive care unit and special care nursery. Because of their early birth and serious conditions, premature infants sometimes cannot tolerate even feeding by tube.

“Premature babies are born too small, too early and too sick,” said Chrivia, who is Missouri’s only board-certified specialist in pediatric nutrition. “Almost all of the storage in the body, the fat, minerals and good bone structure, happens in the last three months of pregnancy.

“Some of the kids we see have gone only halfway through pregnancy. We have to help them gain good weight and develop bone structure in addition to helping them fight off infection, keeping good skin integrity so they don’t get wounds and infections, and keep them growing. Hopefully, we can help them grow the same way that they would have in utero.”

The premature baby’s intestines are very fragile and sometimes cannot tolerate food, she said. “When you are very sick your body shunts blood away from your stomach to help preserve the core of your brain and heart. If there is not enough blood and oxygen, perforations in the intestines can result. Generally, we can’t feed them much through their stomachs.”

Intravenous formulas prepared for neonates are high in protein as well as the calcium and phosphorous needed for bone development. The smallest premature infants, who may weigh one pound, can take about one teaspoon of nutrition each day, given in tiny increments every six hours.

The nutritional status of the smallest babies is tracked through their blood tests and growth indicators — primarily weight, body length and head circumference.

“We are looking at very small differences, maybe 10 grams (about onethird of an ounce) a day in weight,” Chrivia said. The growth goals are less than half an inch each week for length and less than a quarter-inch per week for head circumference.

“Seeing somebody go from one pound to a full-size, full-grown baby who is healthy and going home is rewarding,” she said.

When More Fuel is Needed

The increasing incidence of childhood obesity is creating a need for weight management care in pediatrics. But many patients come to Glennon for treatment of issues that prevent adequate food intake.

Barb Klein, R.D., L.D., provides dietetic support to Glennon’s rehab floor, where occupational therapists re-teach patients the skills needed to eat regular food.

“A lot of these children have had head injuries, so they have to relearn eating,” Klein said. “If they are still on tube feedings, the occupational therapist starts advancing them to blended table foods when that is medically safe. We adjust the caloric content in their tube feedings during the transition time, which can take days to weeks.”

Klein also is part of the hospital’s feeding team, which includes a psychologist and occupational therapist to care for out-patients and some in-patients. The team works with families whose children are not eating a normal diet due to behavioral, sensory or medical issues.

These patients may include children who have autism, cerebral palsy or Down’s syndrome, or children who have been dependent upon tube feedings and are not used to real food. Other children have oral sensitivities, due to reflux or a breathing tube, and refuse to swallow food. Some kids have just decided to be picky eaters.

“There are many children who will not eat age-appropriate foods,” Klein said. “We see toddlers to kids in their early school years, who will eat only one or two things. We saw one child who would only eat French fries and pudding. The family kept feeding him that because that was all they could get him to eat.”

The feeding team assists the families of such children in sticking to the challenging measures needed to break the picky habits. “If the child has normal developmental skills we let them, essentially, get hungry,” Klein said. “The psychologist teaches the parents what behaviors are acceptable and how to address the more difficult ones.”

“We support the family in giving the child what the rest of the family is eating, then it is the child’s choice to eat it or not. After a couple of meals, the kids usually realize that things are different and that they won’t be able to cry to get what they want. We have had kids hold out three or four days, but then they quickly develop more appropriate meal-time behaviors.”

Some children are referred to Glennon for what is known as “failure to thrive.” They are underweight and growing too slowly. “There can be medical issues like heart or lung disease that require the child to burn up more calories than he or she is receiving,” Klein said. “The child can have allergies or reflux. There also can be socioeconomic issues.”

Eating disorders are a growing admission diagnosis at Glennon. Ohlemeyer is medical consultant to a residential eating disorders center in the St. Louis area that is one of just a handful in the country. “When some of the patients arrive at the center, they are so medically unstable that they have to be hospitalized.”

Eating disorders patients, mostly young girls, have a fixation with losing weight, which often can be rooted in a genetic disposition. They may eat only a few hundred calories a day, and some may vomit after eating to try to avoid absorbing calories.

“Most organs tend to shut down when you don’t feed them,” Ohlemeyer said. “We see low heart rate, low blood pressure, kidney damage, bone density loss, liver damage, lack of menstrual periods. Although it is not easy to detect, the brain shuts down, too. Some of this organ damage is permanent.

“We can begin to see changes in the health of these patients when they get down to 85 percent of their ideal body weight. Many of the kids we hospitalize have gotten down to nearly 60 percent of their ideal body weight. Their conditions are pretty severe.”

“Patients with eating disorders have deprived themselves of nutrition so severely they cannot tolerate a normal caloric intake too soon,” said Nancy Lawson, the dietitian who assists in their care.

“We can get into ‘refeeding syndrome.’ If the body is given too many calories too suddenly, it reacts by dropping its levels of potassium, phosphorous and magnesium so much it can affect heart function,” Lawson said. “We start them on 500 to 600 calories a day and gradually increase them.”

Patients must be monitored during and after meals to make sure they consume their food and do not vomit. Liquid meal supplements may be prescribed to provide a large amount of calories and nutrients in a small volume. A patient who refuses to eat or drink may be told that she will be fed through a stomach tube inserted in her nose.

Too Much Nutrition

Many of Glennon’s patients are sick because they eat too much or make poor food choices.

“Nationally, the latest estimate is that 16.6 percent of American kids are overweight or obese. The rate was five percent in the 1970s. It has more than tripled in 25 years,” said Sarah Barlow, M.D., of the division of gastroenterology.

Karen Steitz, M.S., R.D., L.D., is one of the dietitians who assists in Barlow’s weight management clinic and Ohlemeyer’s lipid clinic, which cares for children who have high fat and cholesterol levels. Some patients have elevated lipids due to genetic predispositions, but many are simply overweight and have high-fat, high-cholesterol diets.

“We do see patients who are eating healthy and exercise regularly but have strong family histories of heart disease and their lipid levels are high. Diet may not make a big difference for them,” Steitz said. “Many kids have inappropriate diets. Modest changes in diet and exercise can make a big difference.”

Interventions may make it possible to delay or reduce the patient’s need for lipid medications.

The weight management program includes support from social services and psychology. “We look at the factors contributing to each child’s excessive weight and try to address all the components related to weight management. That includes exercise and behavior modification through psychological intervention,” said Steitz, who also teaches medical nutrition therapy and pediatric nutrition at St. Louis University.

Helping a child lose weight usually requires intervention for the entire family, she said. “We have to change the whole family’s lifestyle choices for the child to be successful. Our biggest challenge is getting families to decrease their frequency of eating out and to avoid all the fast foods and convenience foods. We encourage them to eat regular meals together as a family and eat healthy snacks.”

Obesity early in life can commence health problems that will stretch into adulthood. Weight-related diseases formerly seen mainly in adulthood, such as Type 2 diabetes, are being diagnosed in more children. Patients with Type 2 diabetes produce insulin but their bodies have trouble utilizing it, allowing blood glucose levels to increase. Overweight people are at the highest risk of developing this form of diabetes.

“When we see Type 2 kids, they typically come from a Type 2 family,” Carnes said. “It is tough for a 10-year-old to change his own habits. We have to work with the family to overhaul its nutrition and exercise.”

Good Habits for Life

Helping a child and family develop good nutritional habits can provide the gift of good health for a lifetime.

“Nutrition is an important aspect of everyone’s life,” said dietetic technician Peggy Zdazinsky. “I’m helping the patients get better and helping their families develop a healthy lifestyle.”

“When I entered the field 20 years ago, people didn’t recognize how much of an impact nutrition can have on health,” Klein said. “Now we see that we can make such a difference in someone’s life just by changing the way they eat.”

Brad Gould seems puzzled when asked how his life is changed by having phenylketonuria. “My life is just about the same . . . I do pretty much what other people do.

“I have been on the low-protein PKU diet since birth, so staying on it has not been a problem for me. You have a pretty detailed relationship with your dietitian. You see them more than normal people see their doctor,” he said. “They guide you along and set you straight.”