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OBJECTIVES: To characterize the types of multisite pain experienced by children with functional abdominal pain disorders (FAPDs) and to examine differences in psychosocial distress, functional disability and health-related quality of life in children with multisite pain vs. abdominal pain alone. STUDY DESIGN: Cross-sectional study of children ages 7-17 years (n=406) with pediatric Rome III FAPDs recruited from both primary and tertiary care between January 2009 and June 2018. Subjects completed 14-day pain and stool diaries, as well as validated questionnaires assessing abdominal and non-abdominal pain symptoms, anxiety, depression, functional disability and health-related quality of life. RESULTS: 295 (73%) children endorsed at least one co-occurring non-abdominal pain thus were categorized as having multisite pain with the following symptoms: 172 (42%) headaches, 143 (35%) chest pain, 134 (33%) muscle soreness, 110 (27%) back pain, 94 (23%) joint pain, and 87 (21%) extremity (arms and legs) pain. In addition, 200 children (49%) endorsed two or more non-abdominal pain symptoms. Participants with (vs without) multisite pain had significantly higher abdominal pain frequency (P

Accurate diagnosis and stratification of children with irritable bowel syndrome (IBS) remain challenging. Given the central role of recurrent abdominal pain in IBS, we evaluated the relationships of pediatric IBS and abdominal pain with intestinal microbes and fecal metabolites using a comprehensive clinical characterization and multiomics strategy. Using rigorous clinical phenotyping, we identified preadolescent children (aged 7 to 12 years) with Rome III IBS (n = 23) and healthy controls (n = 22) and characterized their fecal microbial communities using whole-genome shotgun metagenomics and global unbiased fecal metabolomic profiling. Correlation-based approaches and machine learning algorithms identified associations between microbes, metabolites, and abdominal pain. IBS cases differed from controls with respect to key bacterial taxa (eg, Flavonifractor plautii and Lachnospiraceae bacterium 7_1_58FAA), metagenomic functions (eg, carbohydrate metabolism and amino acid metabolism), and higher-order metabolites (eg, secondary bile acids, sterols, and steroid-like compounds). Significant associations between abdominal pain frequency and severity and intestinal microbial features were identified. A random forest classifier built on metagenomic and metabolic markers successfully distinguished IBS cases from controls (area under the curve, 0.93). Leveraging multiple lines of evidence, intestinal microbes, genes/pathways, and metabolites were associated with IBS, and these features were capable of distinguishing children with IBS from healthy children. These multi-omics features, and their links to childhood IBS coupled with nutritional interventions, may lead to new microbiome-guided diagnostic and therapeutic strategies.

Summary Introduction Utilizing a qualitative phenomenological design, the Defining Successful Outcomes and Trade-offs study examined stakeholder perspectives regarding optimal healthcare delivery and outcomes for individuals with a difference/disorder of sex development (DSD). Objective We describe study methods and provide an overview of themes and subthemes. Study design Interviews were conducted with individuals with a DSD (n=24), parents of those with a DSD (n=19), healthcare providers (n=37), and others (n=30). Primary questions regarding clinical management of patients with DSD were: “What is a successful outcome?” and “How do you achieve it?” Results Themes included: understanding of DSD diagnosis and self-efficacy in management is necessary but complex; patient and family psychological well-being; support from others versus being stigmatized; affected person experiences physical health and accepts the implications of their condition; complexities in DSD decision making, roles and expectations; and knowledgeable providers and multidisciplinary teams are essential, notwithstanding persisting barriers (See Summary Figure). Participants recognized competing values potentially forcing trade-offs in decision making. Discussion. Recognition of diverse and sometimes conflicting perspectives regarding optimal pathways of care and outcomes – both within and among those with DSD and their providers –promises to enhance shared decision making. Conclusion Diverse perspectives and perceptions of trade-offs associated with DSD healthcare emphasize the need to tailor care for patients and families.

Decisions about fertility preservation can be difficult in general but the recent application of preservation techniques to pediatric patients has ushered in a host of new ethical considerations. Fertility preservation (FP) may be considered for all patients who are at risk for infertility due to their medical diagnosis or treatment, including those undergoing gonadotoxic chemotherapy, those with differences of sex development (DSD) undergoing gonadectomy, 1 , 2 , 3 and transgender patients undergoing gender affirming surgery. The focus of this paper is to review the ethical issues involved in offering FP to pediatric oncology patients and, to a lesser extent, the new ethical issues that apply to patients with DSD. Some of the techniques and approach to counseling will also apply to transgender individuals, although that is beyond the scope of this work. We aim to discuss several barriers to offering FP and to advise how to counsel families in the setting of rapid changes in this field. Families should be educated about: • Infertility risk assessment and options for FP. • Experimental nature of certain technologies. • Appropriate consent of minor individuals and the concept of assent to treatment. • Financial barriers to storage and use of genetic material. • Time-sensitive nature of decision making. • Ownership of genetic material over the lifetime of a patient. Specific guidance for clinicians regarding some of these points was recently published in an American Academy of Pediatrics Clinical Report, 1 and we will illustrate the use of these guidelines in four case presentations.

Adults with irritable bowel syndrome (IBS) frequently identify foods as exacerbating their gastrointestinal symptoms. In children with IBS, the prevalence of perceived food intolerances and their impact are unknown.Our aim was to determine the prevalence of self-perceived food intolerances and the relationship of these intolerances to abdominal pain, psychosocial distress, and quality of life in children with IBS.We conducted a cross-sectional study. Questionnaire and prospective diary data were collected from 2008 to 2014 by trained research coordinators.Participants were children 7 to 18 years old (pediatric Rome III IBS, n=154; age-sex matched healthy children, n=32) in Houston, TX.Perceived food intolerances and avoided foods were captured using the Childhood Food and Symptom Association Questionnaire. IBS severity was assessed by a ≥7-day pain diary and validated psychosocial questionnaires assessing quality of life, somatization, functional disability, depression, and anxiety.We used descriptive Spearman bivariate correlation, χ(2), and Poisson log-linear generalized model with Wald χ(2) statistics.A greater proportion of children with IBS (143 of 154 [92.9%]) vs healthy children (20 of 32 [62.5%]) identified at least one self-perceived food intolerance (χ(2)=22.5; P0.001). Children with IBS identified a greater number (median=4 [25% to 75% quartile=2 to 6]) of perceived symptom-inducing foods than healthy children (median=2 [25% to 75% quartile=0 to 4]; χ(2)=28.6; P0.001). Children with IBS avoided more foods (median=2 [25% to 75% quartile=1 to 4]) than healthy children (median=0 [25% to 75% quartile=0 to 2.75]; χ(2)=20.8; P0.001). The number of self-perceived food intolerances was weakly associated (r value range= -0.17 to 0.21) with pain frequency, pain severity, somatization, anxiety, functional disability, and decreased quality of life.Children with IBS have a high prevalence of self-perceived food intolerances. The number of these intolerances is weakly associated with measures of IBS severity.

Background & Aims Increased gut permeability might contribute to the pathogenesis of irritable bowel syndrome or functional abdominal pain (IBS or FAP). We investigated whether siblings and parents of children with IBS or FAP have increased gut permeability. Methods We performed permeability tests (using sucrose, lactulose, mannitol, and sucralose) on 29 siblings and 43 parents of children with IBS or FAP, and 43 children (controls) and 42 parents of controls, from primary and secondary care. Permeability studies were repeated in 7 siblings and 37 parents of children with IBS or FAP and 23 controls and 36 parents of controls following ingestion of 400 mg of ibuprofen. Percent recovery of sucrose was calculated based on analyses of urine collected overnight; the lactulose/mannitol ratio and percent recovery of sucralose were based on analyses of urine samples collected over a 24-hour period. Results When we controlled for age, sex, and family membership, siblings of children with IBS or FAP had increased small bowel permeability (urinary lactulose/mannitol ratio) vs controls (P = .004). There was no difference in gastroduodenal (percent sucrose recovery) or colonic (percent sucralose recovery) permeability between groups. Similarly, parents of children with IBS or FAP also had increased small bowel permeability, compared with parents of controls (P = .015), with no differences in gastric or colonic permeability. After administration of ibuprofen, gastroduodenal and small bowel permeability tended to be greater in IBS or FAP siblings (P = .08) and gastroduodenal permeability tended to be greater in IBS or FAP parents (P = .086). Conclusions Siblings and parents of children with IBS or FAP have increased baseline small intestinal permeability compared with control children and their parents. These results indicate that there are familial influences on gastrointestinal permeability in patients with IBS or FAP.

Differences of sex development (DSD) include a variety of complex congenital genitourinary abnormalities--whether sporadic or hereditary. The 2006 DSD Consensus Statement and 2016 Update Consensus Statement encourage better communication among providers, between providers and parents, as well as among providers, parents, and patients when developmentally appropriate.(1, 2) However, a lack of clear communication about the diagnosis and its sequelae may occur at three levels: 1) disclosure from DSD patients’ families to their physician, 2) disclosure from patients to their families/communities, and 3) disclosure from the physician to the DSD patient. Additionally, there is a paucity of research available on how culture can impact disclosure among individuals with DSDs. This article discusses disclosure among the various stakeholders and briefly explores the impact of cultural expectations and beliefs with regards to disclosure.

Reports exist regarding a gradual approach to the care of patients with differences of sexual development. Each patient and family have different values and styles of learning that have to be taken into account. The goals of care should include education about the condition, counseling of the patient and family, and a complete outlining of treatment options. Motivated by a call from the 2010 Health Reform Law for the use of shared decision-making tools and the emphasis placed on these issues by the DSD Consensus Statement, we sought to develop and implement such tools for the DSD population. (1–3) Thus we developed an organized checklist for providers to share with a patients and families affected by CAIS beginning with the initial visit. The development of the document enlisted input from physicians, clinical coordinator, advocacy groups and affected individuals. It allows providers to explain the process of care and develop a plan for delivery of that care over multiple visits spanning six months or more. The checklist is divided into five sections: 1) An overview addressing how much information is desired and in what manner the patient prefers to obtain information; 2) A preferred words list so that the patient can choose nomenclature that is most comfortable; 3) A list of topics to review over the course of multiple visits; 4) A list of questions to be answered by the providers or other resources over time, and; 5) A list of concerns to be addressed before surgical intervention is considered. An organized approach to long-term delivery of compassionate care and accurate information can be facilitated for patients with CAIS by the use of a shared decision-making checklist. Documentation of the care delivery process can stimulate referral to peer support and promote fully informed consent for treatment decisions. The use of the checklist should encourage trust in the provider, as well as aid in identifying and addressing stressors for the patient and family. The checklist will be updated and revised as new treatments and advanced technology emerges.

The care of infants with congenital adrenal hyperplasia has recently been examined and principles of shared decision making are being used to aid families at that crucial stage of care. Although there is no rigorous data to support delay of surgery, some families are choosing to wait until the patient can participate in choosing the course of care. Whether patients undergo reconstructive procedures or not in the newborn period, they may need or desire revision or primary surgeries as an adolescent or young adult. The first priority for one of these young, now more autonomous, patients is to help them take charge of their own care and develop an understanding of their medical needs. In the process of providing that education, providers and teams can connect to the patient, their caregivers and advocates in a way that allows further investigation into possible medical and surgical needs in a less pressurized situation.

Background & Aims We sought to determine the efficacy of psyllium fiber treatment on abdominal pain and stool patterns in children with irritable bowel syndrome (IBS). We evaluated effects on breath hydrogen and methane production, gut permeability, and microbiome composition. We also investigated whether psychological characteristics of children or parents affected the response to treatment. Methods We performed a randomized, double-blind trial of 103 children (mean age, 13 ± 3 y) with IBS seen at primary or tertiary care settings. After 2 weeks on their habitual diet, children began an 8-day diet excluding carbohydrates thought to cause symptoms of IBS. Children with ≥75% improvement in abdominal pain were excluded (n = 17). Children were assigned randomly to groups given psyllium (n = 37) or placebo (maltodextrin, n = 47) for 6 weeks. Two-week pain and stool diaries were compared at baseline and during the final 2 weeks of treatment. We assessed breath hydrogen and methane production, intestinal permeability, and the composition of the microbiome before and after administration of psyllium or placebo. Psychological characteristics of children were measured at baseline. Results Children in the psyllium group had a greater reduction in the mean number of pain episodes than children in the placebo group (mean reduction of 8.2 ± 1.2 after receiving psyllium vs mean reduction of 4.1 ± 1.3 after receiving placebo; P = .03); the level of pain intensity did not differ between the groups. Psychological characteristics were not associated with response. At the end of the study period, the percentage of stools that were normal (Bristol scale scores, 3–5), breath hydrogen or methane production, intestinal permeability, and microbiome composition were similar between groups. Conclusions Psyllium fiber reduced the number of abdominal pain episodes in children with IBS, independent of psychological factors. Psyllium did not alter breath hydrogen or methane production, gut permeability, or microbiome composition. ClinicalTrials.gov no: NCT00526903.

G A A b st ra ct s (33 PR, 232 PU) children completed 8/8 surveys of the study, 67 completed most surveys (67/8). Overall weekly prevalence of GI symptoms: AP (35.3%), nausea (25.5%), constipation (11.3%), diarrhea (8%), vomiting (7.3%). 56% of children with AP reported interference with activities: gym (18.9%), school (14%), difficulty sleeping (12.2%), social activities (10.6%). 2.5% of all children missed school for all causes during study period: 1.1% for AP. 5.7% of all children sought medical attention during study period (1% AP). Extra-GI complaints were common: pains in arms/legs (38.7%), headaches (30.8%) and chest pain (25.2%). Conclusions GI symptoms are common in school-aged children in Colombia and interfere with both daily activities and school attendance. The prevalence of AP and other GI symptoms found in this study were similar to published prevalence of American children using similar methods. Similarly to the American study, children rarely seek medical attention for AP.

G A A b st ra ct s (33 PR, 232 PU) children completed 8/8 surveys of the study, 67 completed most surveys (67/8). Overall weekly prevalence of GI symptoms: AP (35.3%), nausea (25.5%), constipation (11.3%), diarrhea (8%), vomiting (7.3%). 56% of children with AP reported interference with activities: gym (18.9%), school (14%), difficulty sleeping (12.2%), social activities (10.6%). 2.5% of all children missed school for all causes during study period: 1.1% for AP. 5.7% of all children sought medical attention during study period (1% AP). Extra-GI complaints were common: pains in arms/legs (38.7%), headaches (30.8%) and chest pain (25.2%). Conclusions GI symptoms are common in school-aged children in Colombia and interfere with both daily activities and school attendance. The prevalence of AP and other GI symptoms found in this study were similar to published prevalence of American children using similar methods. Similarly to the American study, children rarely seek medical attention for AP.

G A A b st ra ct s and methods. Fifty IBS children (20 males, 40%, 30 females, 60%; mean age 9.9 ± 3.7 years) were consecutively enrolled. All subjects underwent lactulose hydrogen/methane breath test (LBT) to assess SIBO before and one month after the treatment with rifaximin 600 mg daily for one week. All IBS patients filled out a Visual Analogic Scale (VAS) to assess and score gastrointestinal symptoms (abdominal pain, constipation, diarrhoea, bloating, flatulence) at baseline and one month after treatment. Results. The prevalence of abnormal LBT in patients with IBS was 66% (33/50). LBT normalization rate after therapy was 64% (21/33). Compliance was excellent, and no relevant side-effects were observed during treatment. VAS score was significantly higher in IBS children with abnormal LBT than SIBO negatives, and strongly improved after successful treatment. Conclusions. Rifaximin was effective and safe in SIBO treatment and IBS symptoms improvement in childhood. Double blind placebo-controlled interventional studies are warranted to verify the real impact of SIBO on gastrointestinal symptoms in children with IBS.

ment. The mean duration of IBS and PI-IBS was 12.7 y and 12.5 y, respectively, both significantly longer than that of UFBD (9.8 y) and PI-UFBD (8.6 y; P=0.038). Compared with the other groups, patients with PI-IBS most often reported stopping leisure activities (P=0.017), canceling social plans (P=0.049), and avoiding planned activities (P=0.027) because of illness. International travel during the 6 months before illness onset was significantly more common in the PI-IBS (14%) and PI-UFBD (25%) groups compared with the idiopathic syndromes (4.5% of patients in both groups; P=0.006). A bout of acute diarrhea worsened established PI-IBS and PI-UFBD (50% of patients in both groups) more frequently than the corresponding idiopathic syndromes (25% and 18% of patients, respectively; P= 0.002). Conclusion. PI-IBS appeared to be as clinically severe as idiopathic IBS. International travel during the 6 months before onset of functional bowel disease was more common in patients with postinfectious than with idiopathic disease. As TD is potentially the cause of 16% to 22% of PI-IBS cases, TD prevention strategies may help decrease the incidence and worsening of PI-IBS. Studies are currently underway to further examine the relationship between enteric infection and functional bowel disease and to compare the pathophysiology and genetics of PI-IBS and idiopathic IBS.