Feeding and reflux: a parent & professional perspective.

GASTROESOPHAGEAL REFLUX (GER) AS A CAUSE OF AN INFANT OR CHILD'S REFUSAL TO EAT IS BECOMING BETTER RECOGNIZED. HOWEVER, THE MANY MORE SUBTLE INFLUENCES THAT REFLUX CAN HAVE ON FEEDING ARE LESS OFTEN RECOGNIZED. ALTHOUGH VOMITING AFTER MEALS IS THE CLASSIC PRESENTATION, INFANTS AND CHILDREN MAY PRESENT WITH A VARIETY OF MORE SUBTLE SYMPTOMS LESS EASILY RECOGNIZED AS RELATED TO REFLUX, SUCH AS NOT EATING ENOUGH, DIFFICULTY ADVANCING TEXTURE, CHRONIC CONGESTION, IRRITABILITY, DISTURBED SLEEP, OR POOR WEIGHT GAIN. THIS IS THE THIRD IN A SERIES OF ARTICLES THAT WILL CONCENTRATE ON MEDICAL, MOTOR, AND BEHAVIORAL INFLUENCES ON FEEDING AND SWALLOWING ISSUES IN THE PEDIATRIC POPULATION.

A PARENT'S PERSPECTIVE

Our daughter, Faith Elizabeth, was born with arthrogryposis (bent joints) caused by Escobar's syndrome, which is a rare chromosomal abnormality causing muscle atrophy, low set ears, webbing at the joints, eyes, and neck, barrel chest, and scoliosis. She is very bright and socially is like a ray of sunshine. Faith has had dysphagia and reflux since birth. Her suck/ swallow/ breath pattern was uncoordinated, which caused her to choke every time she latched on and sucked. Finally, at around three months, she gave up trying to suck. At that time, she was dependent on the nasogastric tube for boluses of formula/ breastmilk every three to four hours. Sensory issues were increasing at an alarming rate as she would not allow touch to her face, not even a kiss. She would scream while pooping, scream in hunger, and scream after the bolus. Only after she vomited the bolus did she smile and want to cuddle.

Between the ages of three and five months, we had moved back East and began taking Faith to a GI specialist in New Jersey who was recommended to us. He prescribed Neocate, and smaller, more frequent boluses to keep the food down and a feeding pump to distribute the bolus (three ounces over an hour). At five months, there was no significant improvement, very little weight gain, and a G-tube was placed in her abdomen. The next months seemed to go by in a blur. Faith had occupational, physical, and speech therapy because her milestones were very slow to come, and she continued to vomit an ounce or two (out of three) after each meal. At night I would wake once or twice as she choked and vomited in the crib next to our bed. I would call the GI office once or twice weekly and report to the nurses that this was still happening. They would respond with changes to her feeding schedule, the concentration of the Neocate, and say, "Well, she is on a very good acid blocking medication so she should be OK." Her weight never seemed to go up, only drop or stay the same. When Faith became sick with a cold or UTI, she would keep nothing down, dehydrate, and end up in the hospital to be monitored. Once, I even took her to the ER at a hospital in Paterson, New Jersey because I had heard of the hospital's feeding clinic and thought maybe she would be better received there. That got us one step closer with a scheduled Upper GI test. Surprise! The results showed severe reflux with one and a half ounces of fluid. No wonder three ounces never stayed down.

I scheduled an outpatient appointment with the feeding center and took this information to our current GI doctor. I flatly told him that the condition of this child was, if not the same, worse than when we took her to him eight months earlier and that he needed to do something because she was not going to survive in this condition. He began to blame me for wasting time seeking opinions of other doctors. I simply reminded him that this was not about him or me, but about Faith and her failing health. He excused himself to talk with a colleague. At this time, I called the hospital in Paterson and explained to the receptionist my situation and asked if I could please ask the doctor a question. In a few seconds, the doctor was on the phone, and I asked her what I should do if the doctor comes back with suggestions that include fundoplication. I said, "I have an appointment with you soon, but I need you now!" She replied, "Please do not get the fundoplication done until after I have seen the child. A less invasive option is a gastrojejunostomy tube that bypasses the stomach. That will give her nutrition until I see her. The secretary can fit you in on Monday." It was Thursday. Just then the GI doc came in suggesting the less invasive procedure. Things by all means should have gotten better after this, but after we were home from the procedure, Faith began to wretch and eventually was vomiting up blood and bile while on a 24-hour pump through the GJ tube. We stopped the pump and our appointment at the feeding center was the next day.

Upon meeting Faith, the doctor and the nurse practitioner knew that this was a very sick girl. She was under weight and small for her age (partly due to the syndrome), irritable, and lethargic. In just 20 minutes, she had wretched multiple times. After giving the long history, the doctor explained that the rate at which Faith was being fed through the tube was too high and was causing her extreme distress. She turned the feeding pump down to a conservative, yet appropriate, rate to see if Faith would tolerate it. Then she gave me litmus paper--that's right, the paper used to test pH levels in high school science class. The instructions were to extract stomach fluid (from the G tube) one hour and then 12 hours after administering the acid blocker that Faith was currently taking (from the GI doc), place it on the litmus paper, see what color it turned, and record the color. I agreed only if I were to have contact with the doctor and or nurse practitioner each day in case our medically fragile child should need medical advice. At this time, the doctor seemed to be the most learned and concerned doctor, regarding these issues, that we had met in the last year. They agreed to have phone contact with me daily and to see us once a week until Faith's medical issues could be stabilized.

In the first week, it was clear that the feeding pump rate was tolerated, the acid blocker was having no effect on the high acid level in her stomach, and that the nurse practitioner was the most patient of nurses who honored her word by calling me each day if I had not called already. This regimen went on for three to four weeks, and in that time, we started Faith on an acid blocker that was bringing the pH level up and keeping it up for most of 24 hours. Next, Faith was found to be constipated, which was treated with glycerin suppositories and glycolax. As her system began emptying faster, the drip rate over 24 hours was increased by one cc. at a time as Faith tolerated; the retching began to subside. Now remember, Faith at this time was not taking food by mouth, continued to have sensory issues around her mouth and face, and was one year old. Moreover, when she was coming down with a cold, she began retching more often and vomited mucus. This particularly was important for me to understand as a sign of oncoming illness and not as failure, which often brought discouragement.

When the retching disappeared and Faith's health was stabilized, only then did I meet with the speech therapist and the doctor about feeding her by spoon. Also, it wasn't until the symptoms of the GER subsided that Faith began playing more and exploring her world to reach the milestones and skills she had been too sick to learn. Finally, after nine months of outpatient monitoring and assistance for pre-feeding skills at home, Faith was admitted to the day treatment feeding program (or boot camp). It took us seven weeks to complete the program due to illness, but she progressed from flavored water on the spoon to table food purees. Faith went home eating NINE (!), two ounce meals, and gradually, we increased her volume and decreased the frequency of meals. A year and a half later, she was eating finely chopped table foods and high calorie formula as well as four, four once meals per day, and a night drip of 32 cc/hr x 12 hrs. Faith has begun chewing food, and with the staff's guidance, she has begun moving her tongue correctly and is finally asking to eat during the day. Just recently and for the first time, she asked me for milk! Gradually sensory issues are subsiding, and we kiss each other frequently. The little things are amazing.

Without Dr. Eicher and Louise, the nurse practitioner, Faith would not have survived her second birthday. I am grateful for all they do. With their help, feeding issues have moved from the center of our world to the perimeter with the hundreds of other issues juggled throughout the day. We have learned that GER is a disease that is manageable with the correct guidance on a daily, if not meal-to-meal, basis. Its impact is as threatening to physical well-being as it is to one's quality of life.

WHAT IS GER?

GER is the passage of stomach contents back up into the esophagus, the tube connecting the mouth to the stomach. The lower esophageal sphincter (LES), that part of the esophagus that attaches to the stomach, functions as a barrier between the esophagus and the stomach. The LES opens to allow the passage of food into the stomach and then closes to protect the esophagus from any reflux of stomach contents. However, the LES also has short, spontaneous periods of relaxation throughout the day. It is during these transient periods of LES relaxation that GER most commonly occurs. However, GER can also occur if there is a disruption of the LES barrier as with hiatal hernia or neurological injury, which decreases the strength of LES closing. Alternatively, reflux can occur across a normal barrier when there is increased negative pressure in the chest as with increased work of breathing or increased positive pressure in the abdomen as with constipation and stool retention or effortful stooling.

GER occurs commonly in infants. In fact, up to 50 percent of healthy, full term infants may demonstrate symptoms, including spitting up or vomiting either directly or some time after feeding. This is understandable as infants are more predisposed to spitting up or vomiting than adolescents or adults because of the small reservoir of their esophagus. Furthermore, infants do not have the length of esophagus necessary to create an effective LES pressure barrier until about three months of age. As the infant grows and develops, additional protective factors normally come into play that help the infant "grow out" of their reflux. Between four and six months, the infant develops improved trunk control for rolling and then sitting. This more upright posture lets gravity help to decrease reflux. At five to six months of age, solid foods are introduced which do not reflux as easily because of their thickness. Over the next 12 months, the child spends more time upright and ingests more solid food and less liquid, which help to decrease reflux further. Thus simple GER without complication is considered self-limiting. For 85 percent of children with simple GER, the reflux will gradually resolve by age two with only parental reassurance as treatment.

However, GER that is frequent, severe, or prolonged, can result in a variety of problems that increase its negative impact on the child's health and well-being. GER is then referred to as a disorder, or GERD. Traditionally, only medical complications of GER have been recognized, such as esophagitis (irritation of the lining of the esophagus from prolonged acid exposure), recurrent vomiting with poor weight gain, or frequent pneumonias or respiratory infection related to reflux. However, GER can also be associated with more subtle but equally disruptive problems, such as recurrent ear or sinus infections, persistent irritability, food refusal limiting weight gain, food selectivity, or delays in motor development. Children with underlying medical problems and/or neurodevelopmental issues have increased risk for severe or persistent reflux, which exponentially increases the disruption that it can cause. As Faith's case illustrates, what starts out as a problem in infancy can have far reaching and long lasting effects.

GASTROESOPHAGEAL REFLUX AND ITS IMPACT ON FEEDING

Children may present with a variety of feeding difficulties when affected by reflux. Obviously most people think of reflux as spitting up or vomiting with meals, or as a discomfort like heartburn, but children with GERD may also experience varying degrees of nausea, with decreased appetite. Absence of these symptoms, however, does not mean that they do not have GER. Other presenting signs may include limiting amount or variety of foods they will eat, gagging with texture, refusing the bottle or breast-feeding, drinking only while sleepy, or in some cases drinking excessive amounts. Another physiologic response is an increase in salivation that may be evidenced by chronic congestion, or an increase or persistence in drooling. In Faith's case of severe GER, the reflux influenced her swallowing coordination resulting in gagging and choking with bottle feedings, necessitating tube feedings. The tube feedings then aggravated the reflux resulting in vomiting and continued failure to thrive.

The normal development of feeding skills over the first two years of life follow a sequential progression that is dependent on brain maturation as well as successful practice. Thus, if there is difficulty or disruption in early feeding, later skills can be affected as was true with Faith. When solid foods are introduced, a child may refuse the spoon altogether, be selective in what they will accept, or have difficulty advancing texture of food.

Diagnosis of reflux can often be determined from a detailed history and a physical. An empiric trial of an acid blocker medication, such as Pepcid or Zantac, for one month also can be utilized as a diagnostic tool and can be chosen before invasive testing. Additional testing is often ordered either to detect complications from GER, to establish therapy, or to establish a relationship between symptoms and GER. Three tests frequently used include Upper GI, PH probe, and an Upper Endoscopy.

TREATMENT

Treatment for reflux can vary according to age and severity of symptoms. For infants with uncomplicated GER, the "happy spitter," non-pharmacologic recommendations can be made, including a change in feeding schedule or positioning after feeding or the addition of cereal to the bottle.

For infants who take large amounts at infrequent intervals, decreasing amount and increasing frequency of feeds may help reduce reflux episodes. Formula changes include changing from milk-based to a more digestable formula, such as Good Start, or a hypoallergenic formula like Alimentum if a cow's milk allergy is suspected. A soy-based formula may also be suggested. Thickening the formula with cereal has been shown to reduce frequency and volume of emesis (vomiting). It may also reduce time spent crying and may improve sleep. Holding the infant in a head elevated position for 20 to 30 minutes after feeding may reduce GER. This position has been shown to also reduce aspiration and crying time and to speed gastric emptying.

Persistent problems with GER may require pharmacologic intervention, with the use of acid blocker medication. These medications decrease acid content and protect the esophagus from chronic irritation caused from the refluxate. First line medications include Pepcid, Zantac, and Axid, known as H2 blockers. Other agents utilized are Proton Pump Inhibitors, including Prevacid and Prilosec. If delayed gastric emptying has been determined to be a factor, a motility agent may also be added to improve gastric emptying and decrease reflux episodes. Stooling is also an important factor that is often overlooked.

We have noted that improvement with stooling frequency and consistency can improve reflux symptoms by decreasing lower abdominal pressure and number of reflux episodes. The question is whether the GER is a problem.

Red Flags for GER

* Chronic bad breath

* Regurgitation at mealtime

* Irritability at mealtimes and when lying down

* Gagging with texture

* Repositioning while sleeping to avoid "tummy" sleeping

* Complaining of frequent stomach aches

* Refusing to eat

* Not pooping daily

* Regurgitation after meals

* Heartburn or pain in the chest area

* Complaining of food being "stuck"

* Feeling queasy 

* Chronic coughing, wheezing, or laryngitis 

William J. Roche, MS, CCC, BRS-S, is the clinical director of the Regional Craniofacial Center and the Center for Pediatric Feeding & Swallowing at the St. Joseph's Regional Medical Center and Children's Hospital. He earned his Master's Degree from Columbia University and is currently a doctoral candidate at Nova Southeastern University. Mr. Roche is board-recognized specialist in swallowing and swallowing disorders.

Pamela A Martorana, MA, LPC is the licensed professional counselor at the Center for Pediatric Feeding and Swallowing. She earned her Master's degree from Montclair State University and then went on to study at the Minuchin Center for Families. She has a private practice working with families in Bergen County.

Louise Vitello, MSN, APNC is the pediatric nurse practitioner at the Center for Pediatric Feeding & Swallowing. She earned her Master's degree from Rutgers University.

Peggy S. Eicher, MD is the medical director of the Center for Pediatric Feeding and Swallowing at St. Joseph's Children's Hospital. Dr. Eicher has evaluated and treated children for feeding and growth problems for the last 20 years, resulting in publications and invited lectures on pediatric feeding issues.

Tricia LaCour is the proud and dedicated parent of Faith and Abigail.