Most children with gastroenterologic disorders feel ill because of a complex mix of psychologic, developmental, and social factors. Using several case histories, this specialist shows how focusing on these areaswhich conventional medical management addresses inadequatelyis the key to helping such patients get better.
|Jump to:||Choose article section... Case 1 Infant with GER and failure to thrive Case 2 Toddler who withholds stools Case 3 10-year-old with recurrent abdominal pain A better way|
Many children with gastroenterologic disorders feel ill because of a complex mix of psychologic, developmental, and social factors. Using several case histories, this specialist shows how focusing on these areaswhich conventional medical management addresses inadequatelyis the key to helping these patients get better.
Most patients referred for pediatric gastroenterologic care do not have organic disease. Children with functional abdominal pain and disorders of defecation together account for about 50% of new patients in such practices, and other groups of patients have even lower rates of disease. An analysis of ambulatory care practice, for example, revealed that about 90% of patients seeking medical help have no discernable disease.1 It is therefore paradoxical that clinical practice is based on the biomedical model, which holds that the way to help patients is to diagnose and manage their diseases.2 Psychologic, developmental, and social factors that contribute to the patient's illness are typically viewed as less worthy of the physician's time and effort than "real" organic disease, and patients with nonorganic problems are delegated to other helping professions. Many patients think of their functional symptoms as "real," however, and may consider referral to a mental health professional inappropriate, sometimes creating nonproductive controversy around the "physical-vs.-mental" cause of their illness.3,4
Using the biopsychosocial model as the theoretical basis for practice instead of the biomedical model avoids the mind/body dichotomy and the frustration it creates for physician and patient.5 The biopsychosocial model is based on the distinction between disease and illness. Disease is defined as objectively demonstrable tissue damage and associated organ malfunction. Illness connotes the patient's subjective sense of being unwell, suffering, or being disabled.6 Whereas the goal of the biomedical model is the diagnosis and cure of disease, with its predisposition to an organic bias in assessing patients' complaints, the goal of the biopsychosocial model is broader, namely the diagnosis and healing of illness.2,7 To be sure, many illnesses relate chiefly to diseases, such as giardiasis or appendicitis, that have specific treatments to restore well-being. Most of the patients referred to gastroenterologists, however, have illnesses that do not represent disease, such as irritable bowel syndrome, or their diseases are accompanied by psychologic, developmental, or social problems that aren't adequately addressed during conventional medical management.3,5
In evaluating children with abdominal pain, I recommend that pediatricians use a biopsychosocial model of practice instead of the traditional biomedical model, with its inherent limitations. The following three case studies of the most common clinical problems encountered in pediatric gastroenterology show the efficacy of this approach.
The 3-month-old boy, the offspring of an 18-year-old primigravida and 24-year-old father, was born at term weighing 3,324 grams. Before the baby was discharged from the newborn nursery, the pediatrician advised burping the baby after every ounce "to prevent bellyaches." The infant began spitting-up at 4 weeks. His fussiness became troublesome at 7 weeks. "He ate well but screamed as soon as I took the bottle out of his mouth," the mother said. At 8 weeks, vomiting became projectile and his weight lagged. By 9 weeks, the pediatrician suspected pyloric stenosis, but laparotomy failed to reveal pyloric hypertrophy. A central venous catheter was inserted and parenteral nutrition begun. The nasogastric tube was removed three days after surgery. An upper gastrointestinal barium study on the fourth day showed spontaneous gastroesophageal reflux up to the level of the thoracic inlet, significant delay in gastric emptying, but no obstruction. Treatment was begun with intravenous metoclopramide, small, frequent feedings of protein-hydrolysate formula, elevation of the head of the crib, and positioning the infant on the stomach or the right side.
The patient was discharged after one week on Enfamil feedings, 90 mL every four hours, and metoclopramide four times a day before feedings. "He drove me crazy with his screaming," his mother said. Vomiting became more forceful. Loose stooling caused a bleeding diaper rash. His formula was changed to Nutramigen, 5 ounces every four hours. The dose of metoclopramide was lowered. Nevertheless, the infant continued to lose weight.
The patient was hospitalized for the second time two weeks after being discharged. This hospitalization lasted three days. Physical examination on admission showed a scrawny infant who cried intensely and fed avidly. Our provisional diagnosis was "nervous vomiting," a functional vomiting disorder of infancy characterized by failure to thrive and a stressed maternal-infant relationship.8 This state is typically accompanied by gastroesophageal reflux and delayed gastric emptying, which may mimic hypertrophic pyloric stenosis.8 The diagnosis is confirmed when vomiting and failure to thrive remit as the nurturing relationship improves. This is brought about by "a therapeutic trial of comfort," in which the infant's and the mother's emotional and physical distress are identified and relieved.8
After establishing good rapport with the mother, we decided to test the premise that the baby was healthy by treating him as though he were. The mother agreed to this, provided her baby was closely observed as an inpatient until our optimistic hopes were either confirmed or proved wrong. We fed the baby on demand, whenever and as much as he wanted. We burped him only when he paused during feeding, discontinuing the arbitrary interruptions for burping. Unnecessary excitement and diagnostic stress were avoided, and the baby was comforted immediately whenever he fussed.9 We did not use medications, thickened feedings, or positional therapy. Interviews with the mother revealed overwhelming distress and exhaustion, but no evidence of abuse or neglect.
The patient vomited and fussed surprisingly little. He began to gain weight. His stools were mushy and formed. We encouraged the mother to use her maternal instincts in caring for her infant instead of trying to follow the "do's and don'ts" of professionals. At follow-up he was doing well, and had achieved good weight gain (Figure 1).
Comment: Using the biomedical approach, this clinical problem was considered gastroesophageal reflux disease, which resulted in failure to thrive. Treating the disease called for focusing on tubes and sphincters and attempts to alter the hydraulics of vomiting. This model paid little attention to how the infant and mother interacted, whereas the biopsychosocial approach framed the problem as a stressed maternal-infant relationship.10 Management could then be based on the premise that the dysfunctional relationship, rather than idiopathic gastroesophageal reflux, was the underlying problem. The stress the relationship created, according to this model, worsened the infant's irritability, further impaired maternal-infant reciprocity, and affected gastric motility.1114 This paradigm shift prompted measures to relieve physical and emotional stress in both the mother and infant, which then healed an illness that had seemed refractory to treatment.
A 21/2-year-old boy was evaluated for stool withholding and distress during bowel movements. Ten months earlier he had undergone an inguinal herniorrhaphy without incident. Two months earlier, he was hospitalized for a fever of 106° F. He underwent bladder catheterization and venipunctures and promptly defervesced with intravenous antibiotics. The bowel problems began about a month ago: He seemed distressed with each bowel movement, began retentive posturing, and did not stool for three days.15 Attempts to administer an enema at home were unsuccessful. Glycerin suppositories were administered in the pediatrician's office, but it took three adults to hold the child down while he screamed, "Take it out!" The child was begun on daily Castoria and mineral oil by mouth. His stools remained soft, but he continued to withhold whenever he felt the urge to stool.
A week later an enema was administered in the pediatrician's office. The parents described the procedure as "a nightmare" during which he passed two voluminous, mushy stools. The expected improvement in mood and activity followed the evacuation, but the child continued to withhold. The family then consulted three senior pediatric gastroenterologists in succession at three academic medical centers. Each physician subjected the patient to digital examination of the rectum and treated him with enemas, suppositories, and laxatives (which needed to be "forced into his mouth"). Retentive posturing became more frequent and intense. The child became afraid of passing gas.
When I saw the patient in the consultation room, he clearly was anxious and feared being approached. After much reassurance, he allowed me to examine him on his mother's lap, but would not allow me to touch his ears or mouth or to examine his anal region. To gain his trust, I did not force him to undergo any of the diagnostic maneuvers to which he objected.
I elicited and addressed the parents' concerns, misconceptions, and fears during the extended discussion that followed the limited, but painstaking physical examination of their child. We discussed the pathogenesis, safety, and management of functional fecal retention syndrome, and I proposed a treatment plan. It centered around a negotiated agreement with the child to allow him to be "the boss" of his own behind and bowel movements and to never again have anything forced into his anus. His part of the agreement was to cooperate in taking a palatable emulsion of magnesium hydroxide and mineral oil or mineral oil in ice cream every day.
At follow-up three months later, the patient was still a bit worried when he felt the urge to stool, but stooled without coercion or rectal manipulations every day or two. His parents, no longer fearful of his stool withholding, encouraged and approved his efforts at managing his own toileting. The patient no longer worried that his parents would forcibly intervene during his struggle to stool. During the next year, he completely mastered autonomous, trouble-free, age-appropriate toileting skills.
Comment: The biomedical model views functional fecal retention syndrome as a disease-like disorder of the colon and anal sphincters.16 The retained fecal mass is viewed as a foreign body that must be removed by enemas.17 The megarectum that results from this condition is considered a complication caused by the enlarging mass of retained stool and is thought to perpetuate fecal retention because it somehow interferes with whatever creates the defecatory urge. Recovery is brought about by somehow inducing the child to stop withholding and stool regularly.
In the biopsychosocial model, functional fecal retention syndrome is viewed as a loss of (or failure to acquire) the sensorimotor skills necessary for defecation and fecal continence.15 Although the disorder certainly involves tubes and sphincters, it also is caused by anxiety triggered by the urge to defecate. The expectation of pain in a part of the body that cannot be directly seen changes the smoothly coordinated sequence of voluntary muscular activity during normal defecation into an involuntary disturbance of muscular coordination that prevents evacuation and leads to fecal retention.
Why do some children withhold stool for weeks or months at a time? The answer may relate to Piaget's discovery that the thinking of normal children younger than 7 years is animistic; that is, they endow inanimate objects with self-awareness, volition, and the potential to act on others.18 ("The door is mean because it bumped my nose and hurt me. Spank the door!") Indeed, 2-year-olds have been seen to apply this animistic thinking to their stools, waving "bye-bye" to them before they flush the toilet. Or, they might be afraid to flush the toilet.19 Most children with functional fecal retention syndrome confide that they withhold when they feel the urge to defecate because they are afraid their bowel movements will hurt them if they come out, and it seems safer to hold them in until they "go away."15
According to the biopsychosocial view, therefore, functional fecal retention syndrome has two basic elements: a mechanical problem (the hard mass of retained stool that is too wide to pass without causing pain); and a fear of that pain. The mechanical aspect of the problem can be solved by oral administration of sufficient mineral oil or osmotic laxative to soften stool enough so that it cannot be withheld. In my experience with more than 2,000 cases of functional stool withholdingsome for as long as a yearevery fecal mass, regardless of size, can be softened sufficiently to be passed spontaneously by using orally administered laxatives and without resorting to rectal manipulations or nasogastric intubation.20 Laxatives can produce successful evacuation but they cannot cure the child's fear of defecating. Impelled by this fear, he or she may continue to withhold, complaining that "it hurts." The ongoing administration of laxatives will keep reaccumulations soft so that when the rectum becomes full, stool can be extruded with a diameter of no greater than an inch, preventing the discomforts of anal stretching or abrasion.
The child whose rectum is full of pasty or liquid stool may nevertheless be in "retentive crisis," a condition characterized by agitation, complaints of pain, retentive posturing, and acute fear that they may be unable to keep stool safely within.15 With continued laxatives, the child finally evacuates and is relieved. Each time the child goes through a cycle of retention and evacuation that turns out to be much easier than expected, he moves a step closer to overcoming his fear and gaining the feeling that he is in control, rather than the victim of his bowel movements. When he finally overcomes the fear, he will try something he has wanted to do all along: Get rid of the defecatory urge by stooling in the toilet.
Overcoming the fear is a process that can take days to years. Children who are anxious may take longer to overcome their fears than children who are more secure. Children who have been subjected to repeated rectal manipulations because of sexual abuse or medically prescribed anal dilatations take longer, presumably because repeated forceful anal manipulations are psychologically traumatic and cause much greater anxiety.
The most important part of management may be helping parents understand their child's point of view and what they might do to help or hinder his recovery. If they react to their child's distress by becoming frightened themselves, perhaps of the possibility that fecal retention may cause visceral damage or a toxic state, it becomes much more difficult for the child to overcome his own fears. Parents need to be reassured that the child is not in danger, regardless of how much pain he may seem to be experiencing during a retentive crisis. In fact, most of their child's distress is panic rather than physical pain, a distinction the child cannot make.
They can help their child by telling him that he appears to need to pass a bowel movement and that if they were he, they would try "to go." This statement conveys three messages to the child: He is in charge of his own stooling and they will not force anything on him against his will; his parents are giving him realistic advice as to how he might solve his problem; and his parents, as indicated by their tone of voice and demeanor, are not frightened. This perception helps the child begin to cope with his own fear, which would be impossible if he thought his parents were frightened and worried. Each retentive crisis gives the child an opportunity to grapple with an inescapable urge, find a way to relieve it and, in the process, experience the crisis as far less threatening and easy to cope with than anticipated.
Conventional biomedical management of functional fecal retention syndrome relies on enemas, toileting rituals that the child may find coercive, and other anxiety-raising measures. Enemas may temporarily relieve the mechanical component of the problem but they intensify the fear that is part of the child's illness The limited success rates of the entire spectrum of treatments for this disorder are probably related to what is largely ignored: the child's feelings and point of view. No child overcomes this disorder through application of a passively received "cure." The child cures himself because no one else can exercise his eliminative functions for him. Management is optimal when parents and physician make his task easier by keeping reaccumulations of stool soft, avoiding measures that make his job more difficult (such as battles over stooling, toileting rituals, diets, or laxative administration), by appreciating his feelings, and by fostering his autonomy.
A 10-year-old girl, the youngest of three siblings, was referred with a three-month history of recurrent abdominal pain and four weeks' absence from school. She loved school and had been a straight-A student. During the three months before my evaluation, she had at least two outpatient visits to her family practitioner, outpatient consultations from two pediatricians (including a senior pediatric consultant at an academic children's hospital), consultations with two surgeons, an emergency room visit, multiple blood, urine, and stool tests, two hospitalizations, an abdominal ultrasound, an abdominal computed tomography scan and a diagnostic laparoscopy with appendectomy and mesenteric node biopsy. None of these studies led to a positive diagnosis and all attempts at easing her symptoms failed. She began to complain incessantly about abdominal pain, causing a management crisis for her parents and physicians.
Questioning revealed that throughout her illness she had never fallen or walked with her trunk flexed while in pain. She never vomited or had a temperature exceeding 99.9° F, had no signs of GI bleeding or urinary symptoms, and had never been wakened from sleep by pain. The absence of such objective signs of disease or, for that matter, severe pain, had not slowed the search for organic disease or prompted consideration of other factors that could have contributed to her illness.
A separate interview with the patient's mother revealed that in the year before her daughter's illness began, she herself had suffered arthralgias, back pains, abdominal pains, and nausea. Her husband's job had become more stressful and time consuming. The patient's maternal aunt had been hospitalized for surgical procedures. During a private chat, the patient said that her abdominal pain was becoming worse. She spoke of her mother's ill health and feared "that I won't be able to get better."
Physical examination showed well-healed laparoscopy scars, a firmly contracted segment of colon palpable in the left iliac fossa, diffuse, inconsistent tenderness in both lower quadrants, and no guarding. The patient was able to jump in place more than 10 times with obvious enjoyment and no sign of pain. When she finished jumping, I asked her how she felt. "Weird," she said with a half smile. The entire consultation lasted from 8 a.m. until 11:30 a.m. It focused on helping the parents see that their child's pains allowed her to shift her attention from disturbing thoughts (somatizing) and that the pains were not dangerous and did not justify staying out of school. After the consultation, the patient and her mother went to the coffee shop for breakfast and then directly to school. On a follow-up visit three weeks later, the mother said her daughter had missed no school and had few if any physical complaints.
Comment: The successful management of this patient was based on several practical and theoretical considerations. Use of the biopsychosocial model compelled me to examine issues beyond the chief complaint and its differential diagnosis. I recorded the history using a standardized form with sections containing open-ended questions whose purpose is to get the parent to talk about the thoughts, concerns, and feelings that my questions and the answers evoked. In conducting this discussion, I had to decide which of three basic types of doctor-patient relationships to follow: the activity-passivity model (whose prototype is the parent-infant relationship), the guidance-cooperation model (whose prototype is the parent-child relationship), and the mutual participation model (whose prototype is the relationship between two adults).21, 22 I used the mutual participation model, because I could not offer a passively received cure for this child's problem, nor was it likely that the parents could change their behavior towards their child because I advised them to do so.
For the parents to adopt behaviors that would put an end to the child's abnormal illness behavior, they needed not only to acknowledge that such changes were rational, but also to feel that the changes were "right" for their child. In this kind of management, the physician and parents talk with each other and listen to each other as participants of equal importance. They are a group of specialists, each having unique expertise; the physician is an expert on children and their illnesses, and the parents are experts in their child and her individual experience of illness. To be successful, this type of management requires mutual participation and commitment to overcome the child's illness in a process conducted over time. The process can be ruined by the physician's attempt to impose his or her point of view ("guidance") on parents who aren't ready to receive it.
Management in this case was guided by a scheme for analyzing the components of illness (Figure 2).3,4 According to this concept, the components of an illness may fall into as many as six categories, each of which is subject to appropriate management strategies:
Three or four of the six possible components were present in this patient. It is quite possible that the patient may have initially experienced a minor, transient disease such as a self-limited systemic viral illness. Were this the sole component of her illness, it would never have progressed to the extent that it had. A psychologic component seemed to be anxiety, probably related to the child's perception of her mother's and aunt's illnesses and her father's job stress. The child's anxiety was compounded by her parents' worries about her undiagnosed symptoms and her own experience with iatrogenic stress.
The patient may have actually experienced abdominal pain at times. In light of her negative test results, the most likely diagnosis would have been recurrent abdominal pain, a functional disorder most prevalent in children of the patient's age and gender.7 This definition of "functional symptoms" purposely avoids the implications of psychogenicity, with the potentially offensive suggestion that the child's symptoms are caused by "something wrong in her head." This diagnosis meant that the condition neither resulted from, nor caused, disease and explained why diagnostic tests for disease had been negative. The functional cause permitted the parent and physician to avoid what would have thwarted attempts at management: the "physical vs. emotional" controversy. It also permitted the parent to feel relieved rather than negligent in not pressing the physician to do more invasive tests.
The factor that was most prominent in this child's illness was somatizing. In somatizing, attention is shifted away from distressing thoughts or emotions towards physical symptoms, keeping those thoughts or emotions out of awareness. The secondary gain in somatizing was the emotional comfort the child experienced whenever her complaints caused her parents to focus more of their time and energy on being with and comforting her. Unfortunately, the child's complaints also heightened their worry and prompted anxiety-producing medical procedures. This vicious cycle, summarized in Figure 3, seemed to have entrapped the child and her parents. The longer it persisted, the more distorted the parent-child relationship became. Normally, parents place limits and expectations on their child that foster development and protect from harm. When a child becomes ill, the obligations of school and chores are put aside. Parents become more attentive and compliant with their child's wishes, especially if the illness is prolonged or is perceived as potentially tragic. Parents find themselves accepting limits imposed by their sick child, such as taking time off work to be home with their child, or tolerating regressive behavior they would never have put up with previously. These distortions are driven by parents' unrealistic fears and guilt.22
Management of this somatizing component of their daughter's illness required that the parents expect their anxious child to do something she did not want or feel able to do, namely, return to school, even if she does not feel entirely well. If the physician were to tell the parents to ignore their sick child's protests and complaints, the advice would seem hardhearted and they might ignore it out of guilt. To comply with the physician's advice the parents have to "feel right" about it. How does the physician bring about this change in the parents' attitudes? In this case, they needed to be convinced that their child's pains, when she had them, were uncomfortable but not dangerous. They needed to shift their worry away from the nonexistent cancer they feared toward their child's prolonged absence from school, her incapacity that was out of proportion to objective evidence of pain, and the ongoing, unproductive diagnostic procedures.
Functional symptoms are treated with education, effective reassurance, and the physician's offer of continuity and accessibility.4 Any symptom-relieving treatment that is effective and safe should be made available to the child. When the physician and the parents focus mainly on the pain and its treatment, as though it were caused by disease rather than being a harmless discomfort, however, the child is likely to remain in the sick role with all its entitlements. The child's complaints may intensify as dependency needs are indulged. As soon as the functional nature of the pain is established, the goal of management should clearly shift to preventing the symptom from interfering with school attendance and other developmentally important activities.25 Everyone goes to school or work on days he or she does not feel entirely well. Missing school only adds to the child's problems academically and socially. Efforts by the parents, physician, teacher, and school nurse must be coordinated
If the child's complaints make it impossible to get her off to school, the physician must be notified immediately to determine whether the child has a new illness that warrants reevaluation. If it is likely that the complaints are nothing new, then the parents must take the child to school. If she is too uncomfortable to join her class, she is brought to the school nurse's office. The physician calls the school nurse and asks that the child be allowed to rest in a quiet place until she feels well enough to rejoin her classmates. If the child remains unable to go to class or if the nurse has concerns about some more serious condition or considers sending the child home early, the physician must be accessible and help to decide what should be done.26
Bringing about these changes in parents' feelings toward their child is difficult and would be almost impossible if the child were present during the discussion. Thus, it's best to take the history and discuss diagnosis and management with the parents while the child stays in the waiting room. Once the parents have changed their attitude and become aware of the irrational guilt they may be feeling, the child need no longer be excluded from the discussion. Indeed, discussions of the findings, the more realistic concerns, and a clear statement of what the child must do to get well might best be accomplished with the parents and child together. This also lessens the possibility that any of the participants might misunderstand their responsibilities during the child's rehabilitation.
In the three cases presented above, excellent physicians who used the biomedical model of practice were unable to affect healing and became unwitting participants in the perpetuation of their patients' illnesses. The biomedical and biopsychosocial approaches diverge at the point of the clinical encounter. The physician who follows the biomedical model directs the history so as to form and test hypotheses about the presence or absence of diseases until a disease or disorder that can be treated is targeted.27 Using the biopsychosocial approach, the physician also forms and tests hypotheses, but they relate not only to diseases that might be present, but to functional symptoms, the patient's mental and emotional well-being, the extent to which the patient may have abnormal illness behavior (somatizing), bodily symptoms that may be a part of normal development (rather than disease or dysfunction), and the failure of a normally supportive relationship between society and the patient. Making these determinations requires taking a more patient-centered history than is usual. Unless patients talk about their lives as well as their complaints, the physician is unlikely to learn about other areas that are sources of distress that can produce the unfortunate results seen in the patients described above.28
Patient-centered histories require open-ended questions that get the parent thinking and talking about experiences with illness, past and present, their personal well-being and family lifequestions that may uncover evidence of anxiety, depression, or other emotional or behavioral difficulties in their child. A good psychosocial history places the "chief complaint" and the "history of present illness" into the context of the family's experience. This illuminates the timing and contributing factors in the illness, pitfalls to be avoided, and previously unthought-of approaches to management. The physician asks the parent about what they have been told about their child's condition, what their concerns are, and what they fear most about their child's illness. Their answers make clear the emotional forces that motivate their visit and the anxieties that need to be addressed to provide effective reassurance.4
The biopsychosocial model of practice requires not only a paradigm shift from disease to illness; it also calls for communication skills, an understanding of the dynamics of the doctor-patient relationship, and the importance and uses of rapport.29 Despite its appropriateness for dealing with complex clinical problems, this model is not widely used or understood, probably because it is almost impossible to apply within the conventional, biomedical time format of five to 15 minutes for a routine office visit and 20 to 40 minutes for a new patient consultation. Expanding the scope of inquiry beyond the differential diagnosis of diseases pertaining to the patient's chief complaint takes additional time. The consultations in the three cases reported here each required between two and three-and-one-half hours, time allotments that may seem outlandish, until one compares them with the earlier expenditures of physicians' time and resources that produced no benefit. Pediatricians and other primary caregivers who use the biopsychosocial model have designated certain hours of protected time for longer visits. Patients are usually quite willing to compensate the physician for his or her time, especially when they feel that they have been helped.
Few outcome studies compare overall cost effectiveness of biopsychosocial and biomedical care.30 Although outcome criteria are available for morbidity and mortality rates for specific diseases and therapies, outcome criteria for patients' overall well-being are still poorly defined and therefore difficult to measure. Yet it is the patient's sense of not being well (his or her illness) that prompts a visit to the doctor and creates medical costs. The current trends toward greater use of technology and less time for developing the doctor-patient relationship are likely to diminish clinicians' abilities to help patients with complex or initially undifferentiated problems. It will waste medical resources and spoil physicians' most important source of professional satisfactionknowing you are helping patients and earning their gratitude.
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THE AUTHOR is Associate Professor, Department of Child Health, Division of Pediatric Gastroenterology, University of Missouri School of Medicine, Columbia.
David Fleisher. Practical approaches to common gastrointestinal symptoms. Contemporary Pediatrics 2000;4:89.