Category Archives: Pediatric Gastroenterology Intestinal Disorder

Rome V: Lower GI Tract and Biliary Disorders of Gut-Brain Interaction in Pediatrics (Part 1)

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C DiLorenzo, M Saps et al. Gastroenterol 2026; 170: 1367-1387. Open Access! Lower and Biliary Disorders of Gut–Brain Interaction: Child and Adolescent

Before reviewing this article, I wanted to point out that Dr. DiLorenzo, who was the 2025 ANMS Lifetime Achievement Award recipient, overcame great hardship to become a leader in neurogastroenterology. Elsewhere in this same issue, Wong et al (Gastroenterol 2026; 170: 1190-1204) point out that in Italy (& Spain) there is not even a word for bloating!

Key points:

  • For the Rome V recommendations, the Pediatric Committees decided to depart from the age-based divisions used in Rome IV

Irritable Bowel Syndrome:

  • “In Rome IV, for those children with constipation, there was an attempt to differentiate functional constipation (FC) from IBS by first attempting to treat constipation.7 …the Rome V Committee proposes a shift akin to that described in the adult IBS criteria, with a focus on the predominant symptom of abdominal pain as the differentiating factor between IBS-C and FC.”
  • Pathophysiology of IBS includes early life events, heightened nerve sensitivity, and increased gut permeability. Also, “more than 90% of children and adolescents with IBS identify at least 1 food that exacerbates their GI symptoms.34,35“
  • Evaluation: “testing for celiac disease is recommended in those with IBS-D” and possibly testing for parasites and fecal calprotectin
  • Psycholological features: “studies have reported the association between abdominal pain–related DGBI and clinically evident as well as subclinical anxiety and depression.43–47 Anxiety and depression are as likely to follow as to precede pain48 and are not the main factors influencing pain outcomes.49–51…hildren with IBS may have increased school absenteeism, sleep disturbances, multisite pain, and functional disability.54,55“
  • Treatments: Hyponotherapy, cognitive behavioral therapy, percutaneous nerve field stimulation, dietary interventions, probiotics, peppermint oil, psyllium, and pharmacologic interventions (lack of RCT evidence with most medications). Dietary intevertions: “The majority of lactose challenge RCTs in children with abdominal pain–predominant DGBI do not support the role of lactose as the trigger of the child’s symptoms.60…Given concerns for abnormal eating behaviors and the potential occurrence of avoidant and restrictive food intake disorders, it is strongly recommended that a dietitian be involved in any restriction diet and that liberalization of the restriction be instrumented when possible.65” Related blog post: Treatment Guidelines for Pediatric Irritable Bowel Syndrome

Abdominal Pain Syndrome–Not Otherwise Specified

  • “The committee revised the criteria to differentiate intermittent pain (APS-NOS) from constant pain (CAPS) and specified that pain in APS-NOS should not be exclusively associated with meals, menses, or bowel movements.”

Biliary Pain Sydrome

  • “A key difference is the requirement for pain to be in the right upper quadrant with or without epigastric pain, helping distinguish it from functional dyspepsia.99“
  • “Biliary dyskinesia may resolve spontaneously, with conservative treatment often showing equivalent or better outcomes than cholecystectomy in long-term follow-up.104 Therefore, cholecystectomy should be considered only when other nonsurgical treatments have been appropriately trialed and have failed to improve symptoms…surgery may not alleviate symptoms or may exacerbate symptoms or result in complications.”

Abdominal migraine

  • “In cases of overlapping symptoms with cyclic vomiting syndrome, the predominant and most bothersome symptom will guide the primary diagnosis.”
  • “There are no US Food and Drug Administration–approved medications or evidence-based guidelines for treating AM in children…Treatment should be individualized…Children with frequent and debilitating episodes may benefit from prophylactic therapy, as some evidence suggests that antimigraine medications.”

Centrally Mediated Abdominal Pain Syndrome

  • “Continuous pain as in the case of CAPS is much less frequent. There is no specific epidemiologic data for this diagnosis, as CAPS was not part of previous pediatric Rome Criteria.”
  • “Some of the treatment strategies listed in the ESPGHAN-NAPGHAN guidelines related to IBS and FAP-NOS may apply to this condition as well.68 Brain–gut therapies are strongly recommended,122,123 given the central sensitization that is likely present in these patients.”

Functional Abdominal Bloating

  • “Functional abdominal bloating is a recent addition to the pediatric Rome Criteria.”
  • “Potential organic causes of both bloating and distention include small bowel bacterial overgrowth, celiac disease,199 congenital sucrase-isomaltase deficiency, and other malabsorption disorders.195“

Infant Distress Syndrome

  • “IDS is a new name proposed by the Rome V Committee in lieu of the term “infant colic.” The Rome V Committee agrees that this syndrome of excessive crying in infancy belongs to the DGBI group because there is evidence for a role of both brain and gut in its pathophysiology. However, the term “colic” suggests that the pain arises in the colon, which has not been proven to date. “
  • “The Rome V committee, however, agreed that this criterion of 3 hours was arbitrary and that many infants present to the pediatrician with excessive crying of a duration of less than 3 hours per day but with severe impact on at least 1 of the caregivers.”
  • Pathophysiology: “The pathophysiological mechanisms underlying IDS are still poorly understood, but IDS is likely to be a multifactorial disorder with GI, neurologic, and psychosocial disturbances.207 The pathogenesis of excessive crying may be closely related to the development of the GI microbiome.”
  • Maternal Psychology: “Maternal anxiety has been consistently found to be both a preceding and concurrent condition of excessive crying…However, depression seems to be a result of IDS, with excessive crying and maternal depression exacerbating simultaneously in a vicious cycle.214“
  • Treatment: “The cornerstone of helping infants with IDS is to validate the infant’s symptoms and the emotional burden of the parents, reassure the parents that their child is healthy, and educate them about the self-limited nature of IDS and the need for support by family members…Probiotics may reduce crying time in infants with IDS…Evidence for the effectiveness of dietary modifications to treat IDS is scarce and presents a significant risk of bias.222 However, removing cow’s milk from the infant’s diet or from the maternal diet in those who are breastfed may be beneficial..Tthe evidence for using …proton pump inhibitors is very weak.224“

My take: This is a very useful article and worth reading. I like the change in terminology from colic to infant distress syndrome and labeling IBS-C instead of FC when patient has predominantly abdominal pain.

Rome V Pediatric Upper Gastrointestinal Disorders of Gut-Brain Interaction (Part 3)

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R Rosen et al. Gastroenterol 2026; 170: 1347-1366. Open Access! Rome V Pediatric Upper Gastrointestinal Disorders of Gut-Brain Interaction

This article has a lot of useful information and I recommend reading the article in full. The two previous days, the blog posts reviewed Esophageal Disorders and Functional Pediatric Feeding disorders. Today’s covers gastrduodenal disorders, including the following:

Gastroduodenal Disorders

  • Rumination Syndrome
  • Cyclic Vomiting Syndrome
  • Cannabinoid hyperemesis subgroup
  • Chronic Nausea
  • Functional Dyspepsia
  • Postprandial Distress Syndrome
  • Epigastric Pain syndrome

The key points:

Rumination syndrome: “The revised criteria require lack of response to GERD treatment—or, in infants, troubling regurgitation—before diagnosing RS…Delayed gastric emptying is seen in up to 45% of pediatric RS cases.106…Clinical observation during or after meals is often sufficient for diagnosis.111 Confirmatory tests, such as HRIM (R-wave), 24-hour pH-impedance monitoring, or upper endoscopy and contrast studies may be needed for atypical presentations or when there is diagnostic uncertainty.109,112,113…In older children, up to 70% of children have at least 1 psychiatric comorbidity.109,110 Anxiety, depression, and eating disorders are most common, although attention-deficit hyperactivity disorder, obsessive-compulsive disorder, and adjustment disorder have been reported.111

Treatment of rumination syndrome:  “23% of children diagnosed with RS showed self-resolution of symptomatology without treatment after only the initial counseling.115 … The treatment in older children and adolescents focuses on implementing behavioral strategies, modulating food and liquid intake, managing mental health–related issues, and implementing diaphragmatic breathing around mealtimes.107,116…Baclofen may be an adjunctive therapy, although data in children are limited. A recent retrospective study in children found that baclofen is safe and is effective in almost 50% of children.119“

Cyclic Vomiting Syndrome: “CVS leads to significant disability, including an average of 24 missed school days per year and more quality of life impairment than other DGBI.123…The committee supports the treatment approach outlined in the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition CVS guidelines.120“

Cannabinoid Hyperemesis Subgroup: “CHS treatment mirrors CVS and includes abortive and preventive therapies.120,132,133 Long-term management centers on cannabis cessation and TCAs like amitriptyline. As sudden cessation may cause withdrawal and relapse, gradual reduction and lower-THC products may improve success.”

Chronic Nausea Syndrome: “Since its inclusion in Rome IV, studies have confirmed the prevalence of functional nausea and its link to comorbidities like POTS and other autonomic disorders, suggesting it may be part of a broader syndrome. Rome V now uses the term “chronic nausea syndrome” to better reflect this. The diagnostic criteria remain similar to Rome IV. Vomiting is excluded from the definition, as children typically present with nausea alone.” Testing: “routine laboratory tests may be done, but extensive testing rarely provides alternative diagnoses.138 Diagnostic endoscopy is not recommended unless “red flags” are present.138 Gastric-emptying studies are also not routinely needed unless vomiting is severe, the diagnosis is unclear, or the nausea is intractable.”

“Function dyspepsia (FD) describes upper GI discomfort that may include a variable combination of features, including epigastric pain, postprandial upper abdominal fullness, early satiety, bloating, nausea, belching, and vomiting. Two main subtypes have been identified: postprandial distress syndrome (PDS) and epigastric pain syndrome (EPS).152–154“

Related blog posts:

Rome V Pediatric Upper Gastrointestinal Disorders of Gut-Brain Interaction (Part 2)

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R Rosen et al. Gastroenterol 2026; 170: 1347-1366. Open Access! Rome V Pediatric Upper Gastrointestinal Disorders of Gut-Brain Interaction

This article has a lot of useful information and I recommend reading the article in full. Yesterday’s post focused on Esophageal Disorders. Today’s reviews functional pediatric feeding disorders.

Functional Pediatric Feeding Disorders

  • Hypersensitvie dysphagia
  • Anticipatory Restrictive Feeding
  • Hunger dysregulation feeding disorder
  • Medically-triggered functional feeding disorder

The key points:

  • “Pediatric feeding disorders affect 5%–20% of children and are associated with significant morbidity, decreased quality of life, and increased resource utilization.63,64“
  • “By merging examples of different feeding disorders under a single term, ARFID, the definition lacks needed granularity to refer patients for appropriate therapies. Therefore, we propose that the term ARFID should be eliminated and replaced by more precise terms.”
  • “As these are new diagnoses, the relative proportions of subgroups are not known. In 1 study of children with ARFID, 43%–82% had a lack of interest in eating (the new “hunger dysregulation” diagnosis), 21%–68% had sensory-driven food refusal, and 11%–21% had swallowing difficulties (the new “hypersensitive dysphagia” [HD] diagnosis).67“
  • “Children with HD [hypersensitive dysphagia] present with sensations of food feeling stuck despite normal esophageal anatomy, motor function, and bolus clearance.” This is similar to “functional dysphagia” in adults. However, HD includes both oropharyngeal and esophageal sensations because children cannot often differentiate locations or they will not put food in the mouth or will chew and spit food or drinks. Second, normal bolus transit (as measured by HRIM or esophagram if the former is not available) was added to the definition.”
  • “Anticipatory restrictive feeding (ARF) is characterized by the fear of an aversive experience with eating (eg, nausea, pain, bloating, gagging, choking, or vomiting). Clinically, these patients may present with significant diet restrictions resulting in elimination of entire food groups, specific food textures, or food temperatures. Children may express experiences of anxiety, disgust, or fear when consuming new, symptom-triggering, or nonpreferred foods…ARF is common in children with concurrent DGBI and the majority (>80%) of these patients have underlying GI symptoms.68,69“
  • Testing: “Unlike many other DGBI, significant testing may be required before an FPFD diagnosis can be made because of the medical masqueraders (Figure 2) that may mimic an FPFD.73 Testing by feeding diagnosis is shown in Supplementary Table 2. Upper GI endoscopy is almost always recommended for pediatric feeding disorders because EoE can present with symptoms mimicking an FPFD; 25%–50% of patients with EoE have dysphagia and feeding issues and 15% of children with feeding issues have EoE.82–84 Laboratory testing for celiac disease, thyroid disease, a complete blood count, and electrolytes are indicated and, potentially expanded laboratory testing for iron, vitamin A, C, D, B12, carnitine, folate, liver function tests, thiamin, and zinc, depending on the history.83,85” The authors note that endoscopy is sometimes helpful for HD but is recommended in the other FPFD.

Treatments:

  • “Restrictive diets such as the low fermentable oligo-saccharides, di-saccharides, mono-saccharides, and polyols diet, gluten-free diets, and dairy-free diets are not usually recommended for symptom control as they may increase meal-related anxiety, thus worsening or triggering an FPFD.86“
  • “The majority of patients do not need enteral tube support. In the ARFID literature, 20%–46% of patients were reliant on some form of enteral support, although the approach to ARFID has recently moved away from enteral tube use toward multidisciplinary behavioral therapies.67“
  • “Intravenous parenteral nutrition is not recommended for FPFD.”
  • “For patients lacking a hunger drive, cyproheptadine has been found to increase appetite and improve gastric accommodation.87,88“
  • “A retrospective review of intrapyloric botulinum toxin injections (IPBIs) in 85 young children with feeding disorders found some improvement with IPBIs.89“

Related blog posts:

Rome V Pediatric Upper Gastrointestinal Disorders of Gut-Brain Interaction (Part 1)

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R Rosen et al. Gastroenterol 2026; 170: 1347-1366. Open Access! Rome V Pediatric Upper Gastrointestinal Disorders of Gut-Brain Interaction

This article has a lot of useful information and I recommend reading the article in full. The disorders covered include the following:

Esophageal Disorders:

  • Reflux hypersensitivity
  • Reflux-negative esophageal pain disorder (similar to functional heartburn in adults)
  • Aerophagia syndrome
  • Supragastric belching syndrome

Functional Pediatric Feeding Disorders

  • Hypersensitvie dysphagia
  • Anticipatory Restrictive Feeding
  • Hunger dysregulation feeding disorder
  • Medically-triggered functional feeding disorder

Gastroduodenal Disorders

  • Rumination Syndrome
  • Cyclic Vomiting Syndrome
  • Cannabinoid hyperemesis subgroup
  • Chronic Nausea
  • Functional Dyspepsia
  • Postprandial Distress Syndrome
  • Epigastric Pain syndrome

The authors note that the Rome V criteria have expanded to include several more disorders. “This expansion provides a diagnostic framework for patients presenting with chest and throat pain, feeding difficulties, belching, pain with eating, nausea, and vomiting. Given the advances in impedance technology and high-resolution manometry, testing plays a greater role in many of these diagnostic criteria than they have in past Rome iterations. This harmony between symptoms and testing results in more precision in therapeutic approaches that are critically multidisciplinary. The ability to assign new, positive diagnoses across the upper gastrointestinal tract offers new opportunities for pediatric-focused therapeutic trials.”

With regard to esophageal disorders, the key points:

  • “In the past, nonerosive reflux disease was the all-encompassing diagnosis for children without pathologic amounts of gastroesophageal reflux. The use of pH-impedance testing has allowed for additional phenotyping of patients with significant symptoms that are typically associated with gastroesophageal reflux disease”
  • “PPI response does not reliably predict reflux phenotype…Empiric acid suppression trials should be time-limited up to 8 weeks and further diagnostic testing (ie, endoscopy, pH-impedance, and CYP2C19 gene testing if possible) should be pursued if there is no symptom improvement.20 Histamine-2 receptor antagonists can also treat esophageal hypersensitivity and are a first-line therapy for patients awaiting endoscopy.”
  • “Patients with reflux-negative esophageal pain disorder (RNEPD) have a visually normal upper endoscopy and no evidence of pathologic acid reflux with negative reflux-symptom correlation by pH-impedance (or pH-metry or wireless testing). This is equivalent to functional heartburn (FH) in adults. However, unlike adult FH, symptoms of RNEPD may include intermittent retrosternal pain, heartburn, throat pain, or burning sensation in the throat, at least 3 times per week for 2 months.31 Younger children may present with crying or repeatedly pointing to areas of discomfort. Two studies found that 38%–44% of pediatric patients with normal endoscopy undergoing pH-impedance testing met criteria for FH per the adult Rome IV definition.3,4…Because RNEPD falls on the spectrum of visceral hypersensitivity, neuromodulators should be the mainstay of therapy”
  • “Aerophagia, a normal physiologic phenomenon, should only be considered a syndrome if it impacts quality of life and causes symptoms. Previously, increased flatus was considered a major criterion but because flatus may go unnoticed, it is no longer a major criterion…Treatment No therapeutic trials exist. However, in patients with severe distention, a nasogastric tube or an existing gastrostomy tube can be used to vent air from the stomach.55 If colonic distention is present, rectal decompression may be appropriate. In patients with chronic stable symptoms, a conservative approach is sufficient. Speech therapy or CBT aimed at reducing the air swallowing may be tried. Benzodiazepines can be considered in severe cases. Circumstantial evidence suggests that infants swallow less air using different bottle or nipple systems.56“
  • Supragastric Belching Syndrome “SGB is a voluntary yet subconscious behavior…Most patients present with excessive belching as the primary symptom. However, the symptoms may sound like hiccups to patients or parents. Often no tests are needed, as the story of multiple repeated belches is nearly pathognomonic for SGB. SGB typically occurs outside of meal periods and does not occur during sleep. pH-impedance or HRIM can be performed to confirm the diagnosis. However, absence of belching during testing does not exclude the diagnosis, as events can be sporadic. Treatment In a single randomized trial of behavioral interventions in adults, which included education about the disorder, warning signs for oncoming events, and breathing exercises, patients who received the behavioral interventions had higher rates of symptom improvement lasting up to 6 months”

Related blog posts:

Big Studies Supporting Combination Advanced Therapy for Ulcerative Colitis and Crohn’s Disease

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An excerpt:

Two [randomized controlled] Phase 2b trials enrolled patients with moderate-to-severe disease who had already failed one or more therapeutic classes of drugs…

One trial analyzed 693 patients with Crohn’s disease, while the other analyzed 572 patients with ulcerative colitis…The trials tested an experimental therapy that combined golimumab and guselkumab, which are already in the market…

In the Crohn’s trial, 49.2% of the most treatment-resistant patients who received a high dose of the combination therapy achieved clinical remission after 48 weeks, compared to 27.3% receiving guselkumab and 23.1% taking golimumab…And the safety profile was about the same. The results of the ulcerative colitis trial showed a similar pattern.

DUET-CD study
“In the overall population, JNJ-4804a demonstrated higher clinical remissionb rates (50.8%) and endoscopic responsec rates (38.1%) versus golimumab (25.4% for clinical remission, 19.8% for endoscopic response) at Week 48. The JNJ-4804 rates were also numerically higher than the rates achieved with guselkumab (42.5% for clinical remission and 33.9% for endoscopic response).”

DUET-UC study
“In the overall population, JNJ-4804a demonstrated superior clinical remissiond rates compared to golimumab, with 41.0% of JNJ-4804-treated patients achieving clinical remission at Week 48 versus golimumab (11.5%), and numerically higher rates than guselkumab (34.0%).”

“Based on results from the Phase 2b DUET studies, Johnson & Johnson will be initiating the Phase 3 DUET ENCORE-CD trial in adults with moderately to severely active CD as well as the Phase 3 DUET ENCORE-UC trial in adults with moderately to severely active UC.”

My take: In both of these phase 2b trials, the combination therapy was more effective than either guselkumab or golimumab monotherapy. The combination therapy was about 8% and 7% more effective for Crohn’s disease and Ulcerative colitis, respectively, compared to guselkumab monotherapy in terms of clinical remission.

Related blog posts:

Sunset at Kiawah Island, SC

How Does Prior Topical Steroids Affect Response to Dupilumab for Eosinophilic Esophagitis

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M Chehade et al. Am J Gastroenterol 2026; 121: 649-660. Open Access! Dupilumab Efficacy in Children With Eosinophilic Esophagitis With Prior Swallowed Topical Corticosteroid Use: A Subgroup Analysis Thanks to Ben Gold for this reference.

Background: “The aim of this exploratory, post hoc subgroup analysis of EoE KIDS was to assess dupilumab efficacy and safety in patients aged 1–11 years with EoE previously treated with STCs” [swallowed topical corticosteroids]. This study further examined th EoE KIDS cohort (Chehade M, Dellon ES, Spergel JM, et al. Dupilumab for eosinophilic esophagitis in patients 1 to 11 years of age. N Engl J Med 2024;390(24):2239–51.)

Methods: The trial consisted of the following: part A, a 16-week, randomized, double-blind, placebo-controlled treatment period; part B, a 36-week, extended active treatment period in which patients knew that they received active treatment but did not know their regimen; and part C, a 108-week, open-label extension period in which all patients received higher-exposure dupilumab. Eligible patients were aged 1–11 years with a confirmed diagnosis of active EoE who were unresponsive to ≥8 weeks of PPIs.

Of 102 patients, 82 (80%) received prior STCs and 59 (58%) had prior inadequate response, intolerance, and/or contraindication (IRIC) to STCs.

Key findings:

  • At W16, higher-exposure dupilumab improved rates of histologic remission vs placebo in patients with prior STC use (60.7% vs 0.0%) and prior IRIC to STCs (60.9% vs 0.0%).
  • Responses were maintained at W52 with higher-exposure dupilumab, with improvements observed in patients who switched from placebo to higher-exposure dupilumab.
  • “Findings seemed comparable in those without prior STC use or prior IRIC, although patient numbers were small.” Only 9 patients in the treatment cohort did not haver prior STC use.

My take: It appears that dupilumab works well in those with and without prior swallowed topical corticosteroids (STCs). Though the numbers are small, the response appears more robust in those without prior STCs; perhaps, those with prior STC failure had more refractory EoE.

Some good brief YouTube EoE educational videos for families from GIKids.org (with pharmaceutical funding), links:

Related blog posts:

Appendectomy for Refractory Ulcerative Colitis: 2026 COSTA Study

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Visser E, Reijntjes M, Heuthorst L et al.The Lancet Gastroenterology & Hepatology, 2026; 11, 190-203. Appendicectomy versus switching to a JAK inhibitor in inducing remission in patients with active ulcerative colitis after biologic therapy failure (COSTA): 1-year results of a multicentre, prospective, cohort study

Last year, the ACCURE Trial (see blog post link below), showed that laparoscopic appendicectomy, in addition to standard medical therapy, significantly reduced the relapse rates for ulcerative colitis (UC) within 1 year. Most patients were treated with mesalamine.

The COSTA study examined adult patients (n=125) who were not responding to advanced therapy. Patients were offered one of three treatments: laparoscopic appendicectomy while continuing their existing advanced therapy at a stable dose; switching their advanced therapy to a JAK inhibitor; or colectomy. 116 patients were included in the modified intention-to-treat-analysis (67 received appendicectomy and 49 received JAK inhibitor (primarily tofacitinib).

Key findings:

  • 22 (32.8%) of 67 patients in the appendicectomy group were in clinical remission without therapy failure at 12 months compared with six (12.2%) of 49 patients in the JAK inhibitor group (p=0.016)
  • At 12 months, corticosteroid-free clinical remission without therapy failure was attained in 22 (32.8%) of 67 patients in the appendicectomy group compared with six (12.2%) of 49 patients in the JAK inhibitor group  (p=0.010). Clinical response in 49 (73.1%) of 67 patients compared with 26 (53.1%) of 49 patients (p=0·025), and endoscopic response in 31 (48.4%) of 64 patients compared with 11 (25.6%) of 43 patients (p=0·018)

My take (borrowed in part from the authors): “Appendicectomy as an adjunct to advanced therapy in biologic-exposed patients with active ulcerative colitis was associated with higher clinical remission rates at 12 months compared with switching to a JAK inhibitor.” We don’t know how appendectomy would influence disease course in pediatric patients. We also don’t know how this information will be incorporated into adult guidelines.

Interestingly, there have been studies (two cited below) indicating that appendectomy lowers the risk of developing inflammatory bowel disease:

Related blog post: ACCURE Trial: Appendectomy As an Adjunct Ulcerative Colitis Treatment Plus One

Kiawah Island at Sunrise

    Dr. Stacy Kahn: Clostridioides difficile 2026

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    Recently, Dr. Stacy Kahn gave our group an excellent update on Clostridioides difficile. My notes below may contain errors in transcription and in omission. Along with my notes, I have included many of her slides. Dr. Kahn has been a leader on treatment and advocacy for C. difficille. In 2025, she received the Leadership Award from the Peggy Lillis Foundation recognizing her clinical, research and advocacy efforts related to C. difficile awareness and treatments.

    Key points:

    Diagnosis: C. diff is difficult to diagnose. The NAAT-based assays are highly sensitive but cannot readily distinguish active infection from colonization. ELISA toxin assays have higher specificity. However, there are many of these assays and their reliability in identifying active infection from colonization varies. In individuals with underlying diseases like IBD and IBS, this can create uncertainty about the diagnosis of C. diff.

    Presentation: Symptoms are quite variable, from asymptomatic to bloody diarrhea to fulminant colitis (uncommon in kids). Profound urgency is a common feature.

    Transmission: C. diff bacteria can survive on surfaces for 24 hrs. The spores can survive months to years. In addition, the (invisible) spores are highly resistant to heat, disinfection and antimicrobials. Thus, nursing homes and hospitals are frequent reservoirs.

    Epidemiology: C diff rates in the hospital setting have improved, likely due to antibiotic stewardship. Community rates have increased; though, precise estimates are problematic as the diagnostic testing is not straightforward.

    Costs: In 2016, the estimated annual costs due to C diff were $ 6.3 billion (Zhang S. et al. BMC Infect Dis. 2016).

    Resources/Websites:

    Severe C diff in Children: In a retrospective study of C diff in hospitalized children (2013-2019, n=17,142 children) showed that among 23,053 CDI admissions, 74 (0.3%) had a colectomy (55 in IBD patients), and 29 (0.1%) had toxic megacolon. All-cause mortality was noted in 429 (1.9%) (Reference: Edwards PT, Kahn SA, Nicholson, M et al. J Pediatr. 2023; 252:111-116.e1. Open Access! Clostridioides difficile Infection in Hospitalized Pediatric Patients: Comparisons of Epidemiology, Testing, and Treatment from 2013 to 2019).

    Testing: Recommendations include avoiding testing in those taking laxatives; however, an exception to this would be patients with motility disorders. Even combination testing cannot always distinguish between colonization and active infection. In addition, there are numerous toxin tests with variable performance.

    [From prior blog post: In a large adult study with 293 of 1416 hospitalized adults testing positive for C. diff, virtually all CDI-related complications and deaths occurred in patients with positive toxin immunoassay test results. Patients with a positive molecular test result and a negative toxin immunoassay test result had outcomes that were comparable to patients without C difficile by either method. (Overdiagnosis of Clostridium difficile with PCR Assays)]

    Treatment:

    • 1st line treatment remains vancomycin.
    • 10-day treatment course is recommended.
    • Fidaxomicin, particularly for recurrrent C. diff could be helpful and easier to administer (2/day).
    • Prophylactic treatment (low dose vancomycin) may be appropriate in high risk individuals needing to take antibiotics.
    • FMT is no longer readily available from stool banks. Donor-directed FMT may be an option after appropriate screening. Given the lack of stool banks, urgent treatment with FMT for severe cases is not available.
    • Probiotics have not been proven effective in reducing recurrence and increase the costs for families. A diet high in fruits and veggies (‘eat the rainbow‘) could help restore a more healthy microbiome.
    • Newer treatments in adults, Vowst and Rebyota, are expensive and not readily available for children. Anecdotal reports suggest they may be beneficial in pediatric patients.

    Conclusions: C diff research is difficult in pediatrics. Many of the patients who need treatment would be excluded from trials. There are very few treatment options in kids.

    Related blog posts:

    Disclaimer: This blog, gutsandgrowth, assumes no responsibility for any use or operation of any method, product, instruction, concept or idea contained in the material herein or for any injury or damage to persons or property (whether products liability, negligence or otherwise) resulting from such use or operation. These blog posts are for educational purposes only. Specific dosing of medications (along with potential adverse effects) should be confirmed by prescribing physician. Because of rapid advances in the medical sciences, the gutsandgrowth blog cautions that independent verification should be made of diagnosis and drug dosages. The reader is solely responsible for the conduct of any suggested test or procedure. This content is not a substitute for medical advice, diagnosis or treatment provided by a qualified healthcare provider. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a condition.

    Legislating Directed-Donated Blood

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    JW Jacobs et al. N Engl J Med 2026;394:1667-1669.
    Legislating Medicine — Directed Donation and the Politics of Patient Choice

    In a previous post (Increase in ‘Unvaccinated’ Blood Requests), the increase in requests for directed-donated blood to avoid “vaccinated” blood was discussed. This article describes pending legislation in Tennessee to make this a patient right.

    An excerpt:

    In February 2026, members of the Tennessee General Assembly introduced House Bill 2166 (HB 2166, “An Act to Amend Tennessee Code Annotated, Title 68, Chapter 32, Relative to Blood Donations”), which would require blood banks and hospitals to comply with directed-donation requests for patients scheduled for medical procedures.1 Its sponsors framed the bill as protecting patient choice by ensuring that patients have the right to select what is put into their bodies. The paradox is that the U.S. community blood supply is already among the safest in the world, the product of decades of evidence-based practice, universal donor screening, and rigorous infectious disease testing. HB 2166 does not fix a broken system. Instead, it risks undermining one that already functions safely and effectively — which is precisely why this legislation merits attention in domains beyond the blood bank. The bill exemplifies a broader pattern in which politicians seek to legislate medical practice in ways that override scientific consensus while invoking the language of autonomy and choice…

    What is emerging is not an expansion of evidence-based patient rights but a distortion of them. The patients’ rights movement of the 1970s — built around informed consent, refusal of treatment, and shared decision making — led to genuinely important protections, but it envisioned those rights operating within the framework of evidence-based medicine, not as mechanisms to compel clinicians to provide interventions that scientific organizations and medical societies have identified as harmful…HB 2166 and related bills do not just expand patient choice; they transform misinformation-driven preferences into enforceable medical policy, granting pseudoscientific fears the force of state law. The result, unfortunately, is not patient empowerment, but legislated harm delivered with the imprimatur of democratic governance.

    This dynamic extends well beyond transfusion medicine. Similar patterns are increasingly visible in vaccine policy, public health governance, and reproductive care. 

    My take: When a person decides to take additional risks (eg. riding a motorcycle, drinking raw milk, not using a seat belt), the consequences primarily impact that individual. However, it does not feel right to compel others to assist in delivering substandard care. Though, HB 2166 does not waive existing donor-eligibility and safety requirements, it could still lead to delays in care with worsened outcomes.

    Victoria Island, Argentina

    Beneficial Off-Target Effect: Upadacitinib Improved Eosinophilic Esophagitis (Case Report)

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    N Nguyen , M Bauer. JPGN Rep. 2026;1-3.  Successful treatment of eosinophilic esophagitis with upadacitinib prescribed for atopic dermatitis. doi:10.1002/jpr3.70170

    This case report describes a 15 yo with severe atopic dermatitis and multiple atopic diseases whose eosinophilic esophagitis remained in remission after starting upadacitinib, a JAK1 inhibitor, and stopping dupilumab. JAK1 inhibitors, such as upadacitinib and abrocitinib, are approved for severe AD. 

    The discussion notes that there had been a prior case report of tofacitinib, a JAK1/JAK3 inhibitor, effectively treating refractory EoE. The authors “hypothesize that JAK inhibition of key Th1 and Th2 signaling pathways including IL-4, IL-13, and TSLP could effectively treat EoE, while also treating AD.”

    My take (borrowed from authors): “If upadacitinib is used for the treatment of AD, cessation of other therapies for EoE, particularly biologics like dupilumab, should be strongly considered.”

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