Invisible Workload of Caring for Pediatric Patients with Inflammatory Bowel Disease

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Background: “Historically, telephone calls were the primary means of communication between families and clinicians. With the widespread adoption of electronic health records (EHRs) and patient portals, asynchronous digital messaging has become increasingly common. Although these platforms may enhance access and patient engagement, evidence suggests they do not simply replace telephone encounters; instead, they may increase overall communication volume.7 Lower thresholds for initiating messages, the need for iterative clarification, and miscommunication may all contribute to this rise, raising concerns about added workload and potential clinician burnout…Understanding the timing, magnitude, and predictors of between-visit communication is essential to improving care delivery and accurately estimating workforce needs to effectively manage pediatric IBD patients.”

Methods:  From the shared electronic health record, the data from 226 patients (0 to22 years) was quantified. This included outpatient visits, emergency care, and procedures, as well as between-visit care (portal messages from patients, telephone encounters, and clinician-patient review of results) from prediagnosis through long-term follow-up.

Key findings:

  • Between-visit care rose from a median of 1 event per 6 months at time >1 year prediagnosis to 64 events in the year following diagnosis
  • After the first year following diagnosis, between-visit care was a median of 41 events per year
  • There was a strong, graded relationship between disease severity and health care utilization, with the greatest increases seen in subspecialty visits, emergency care, and between-visit care among patients with moderate to severe symptoms
The number of results review and portal message encounters relative to the time of diagnosis
This chart shows the number of telephone encounters relative to the time of diagnosis
Disease severity affects frequency of messages/phone calls.
But, these interactions are frequent even in asymptomatic patients.

Discussion Points:

  • “Even during periods of relative disease quiescence, patients generated substantial volumes of portal messages, telephone encounters, and result review requirements. These findings underscore that the longitudinal management of pediatric IBD extends far beyond scheduled clinic visits and episodic care.”
  • “This persistent care burden likely reflects the complexity of pediatric IBD management including medication titration, symptom monitoring, laboratory surveillance, comorbidity screening, insurance navigation, school-related concerns, anticipatory guidance, administrative needs, transitional readiness planning, and caregiver and patient education.11 Unlike acute care utilization, which may diminish as disease control improves, the need for ongoing communication and care appears intrinsic to chronic disease management in the pediatric IBD population.”
  • “Despite its clinical importance, between-visit care remains largely invisible in traditional utilization metrics and is frequently unreimbursed. Our findings indicate that this hidden workload is substantial, persistent, and closely tied to disease complexity rather than patient demographic factors.”

The editorial from Kellermeyer notes that this invisible care did not include “the substantial administrative workload associated with prior authorization (PA) for advanced IBD therapeutics, insurance denial management, appeals, and peer-to-peer reviews …[which] are notoriously difficult to capture in electronic health record (her) metadata.”

My take: There is a lot of behind the scenes physician work that is needed to help manage patients with inflammatory bowel disease. I suspect most families do not realize the extent of this work.

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Colic and Later Food Allergies

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K Switkowski et al. The Journal of Pediatrics, 2026; 294. Open Access! Associations of Colic and Excessive Crying in Infancy with Food Allergy Outcomes in Childhood and Adolescence

Background: The authors have previously observed “increased risks of eczema, allergic rhinitis, and asthma throughout childhood and adolescence among children with a history of infant colic compared with unaffected infants.14“

Methods: Prospective study of 1263 generally-healthy participants with parent-reported  food allergy from early childhood through mid-adolescence using multivariable logistic regression. In a subset (n = 242) with available biomarkers, the associations of colic with food-specific IgE sensitization in early childhood were examined.

Key findings:

  • “In early childhood, 10% of children in Project Viva had a food allergy reported by their mothers. Peanut or tree nut allergies were most prevalent (6%), followed by cow’s milk (4%) and egg (2.5%) allergies”
  • “Participants who had colic (25%, n=320) had a greater risk of any food allergy in early childhood than those unaffected by crying or colic (13% vs 8%; OR 1.7)”
  • “The risk of current milk and egg allergies in early childhood also was greater for those who had colic as infants vs those unaffected (OR for milk allergy: 1.8)”
  • “In early adolescence, the colic group had 2.1 times the risk of peanut allergy (8% vs 4%) vs the unaffected group”
  • “In the subset with IgE, the colic group had 2.5 times the risk of early childhood IgE sensitization to peanuts compared with the unaffected (22% vs 11%).” However, none of the other foods had significant IgE sensitization: Cow’s milk OR 0.7, Egg white OR 0.5, Wheat OR 1.1, Soy OR 1.9, Sesame OR 1.4, Any IgE sensitization OR 0.8

Discussion Points:

  • The authors “do not believe that colic itself is a cause of later food allergy but rather could be an early marker of greater risk for developing food allergy…these findings argue against characterizing colic as a benign, transient, and self-resolving condition as some have suggested.”
  • Preventive measures should be implemented. “Early and consistent exposure to potential allergens at specific critical windows of life, particularly among high-risk children, is now known to be effective in promoting allergen tolerance and preventing the development of food allergy.3“
  • Study limitations:
    • “Parent-reported food allergies [were used] to define this outcome and acknowledge that this may involve some misclassification of outcome status if parents report allergies that have not been clinically validated.” Though, in a previous study, the “overall agreement between parent-reported and clinician-documented allergy status” was 98%.
    • There was no data indicating whether food introduction in infants with colic was different than other infants.

My take: It is unclear to me whether colic (now labeled Infant Distress Syndrome) is a true risk factor for later atopic diseases. It is possible that the presence of colic could increase the use of more elemental formulas and postpone food introduction which could increase the risk of food allergies.

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

Kiawah Island, SC

AGA Clinical Practice Update:  Clostridioides difficile Infection in Inflammatory Bowel Disease

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S Khanna et al. Gastroenterology, 2026 (In press). Open Access! AGA Clinical Practice Update on Management of Clostridioides difficile Infection in Inflammatory Bowel Disease: Expert Review


Best Practice Advice Statements

  1. In patients with IBD who have new or worsening diarrhea, CDI should be excluded, especially among those with colonic involvement, as they are at increased risk of CDI. Clinicians should consider and treat CDI in patients with end ileostomy or ileo-anal pouch anastomosis with worsening diarrhea.
  2. In patients with IBD and suspected CDI, a multistep toxin-based assay should be used for diagnostic evaluation.
  3. In patients with IBD and recent CDI who have been treated successfully with antibiotics, recurrent diarrhea should prompt retesting for CDI.
  4. In patients with IBD who develop an initial episode of CDI, clinicians should preferentially use fidaxomicin or use vancomycin if fidaxomicin is unavailable or cost-prohibitive. Metronidazole should not be used.
  5. Clinicians should strongly consider hospitalization for patients with IBD and CDI who demonstrate features of severe colitis or systemic toxicity (eg, more than 6 bowel movements per day, severe abdominal pain, marked leukocytosis, hemodynamic instability, or other evidence of sepsis).
  6. When selecting an immunosuppressive therapy to treat IBD, no class or mechanism of action has a differential risk of CDI and, therefore, clinicians should choose the therapy that is best to treat the IBD.
  7. In patients with IBD and acute CDI, concurrent treatment of IBD is critical and clinicians should continue therapy with the required immunosuppressive therapies (ie, immunomodulators, biologics, or small molecules). Steroids can also be used if deemed necessary while CDI is treated with antibiotics.
  8. Clinicians should consider endoscopic evaluation for IBD activity and exclusion of concomitant cytomegalovirus infection if symptoms persist 48–72 hours after initiation of treatment for CDI.
  9. Clinicians may consider loperamide in patients with improving inflammation and infection but ongoing diarrhea.
  10. Clinicians should offer microbiome-based therapies (eg, fecal microbiota, live-jslm, fecal microbiota spores, live-brpk, or unapproved fecal microbiota transplantation) to patients with IBD with at least 1 recurrence of CDI to prevent future infection.
  11. In patients with IBD, clinicians should not advise probiotics for primary or secondary prevention of CDI.
  12. In patients with IBD and a history of CDI who are receiving systemic antibiotics, clinicians may consider oral vancomycin prophylaxis as secondary prevention.

Testing Caveats:

  • “Because NAAT (nucleic acid amplification test) alone can detect colonization, positive EIA (enzyme immunoassay) with NAAT confirms diagnosis. Positive NAAT and negative EIA should be interpreted with caution due to low sensitivity of EIA.”

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Interleukin-10 Autoantibodies and Development of IBD Plus One

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N Gharahdaghi et al. N Engl J Med 2026;394: 2212-2222. Interleukin-10 Autoantibodies and HLA-DRB1*01:03 in Inflammatory Bowel Disease

Background: “The allele HLA-DRB1*01:03 is the strongest genetic risk factor not only for susceptibility to ulcerative colitis but also for complicated phenotypes, including acute severe ulcerative colitis and an increased likelihood of surgical resection.2-5 However, the underlying pathogenic mechanism linking this HLA allele to disease remains unclear.”

“Neutralizing autoantibodies against interleukin-10 can result in a phenocopy of monogenic defects of interleukin-10 signaling in children and may be associated with inflammatory bowel disease (IBD)…In one child, anti–interleukin-10 titers and disease activity responded to B-cell–depleting anti-CD20 therapy.12“

Methods:

Key findings:

  • Interleukin-10–neutralizing autoantibodies were detected in 173 of 4909 patients with IBD (3.5%) and in none of 1006 controls (P<0.001)
  • High anti–interleukin-10 activity in serum was associated with a reduction in detectable interleukin-10 and with an exaggerated proinflammatory cytokine response
  • Anti–interleukin-10 seropositivity was strongly associated with HLA-DRB1*01:03 on the basis of imputed data from the Oxford cohort (odds ratio, 50.0), the U.K. IBD BioResource cohort (odds ratio, 24.7), and in a high-resolution sequencing analysis of data from the Oxford cohort (odds ratio, 29.5)

Discussion Points:

  • “The genetic association between HLA-DRB1*01:03 and anti–interleukin-10 autoreactivity provides mechanistic insight into one of the strongest known genetic susceptibility factors for IBD, with possible diagnostic, prognostic, and therapeutic implications.”
  • “Monogenic interleukin-10–signaling defects tend to manifest during infancy with colonic and penetrating disease, poor response to IBD therapies, high inflammatory activity with notably elevated C-reactive protein levels, and a high incidence of postoperative complications.27 It will be informative to establish the extent to which anti–interleukin-10 seropositivity associates with a similar disease pattern.”
  • “Our data highlight the need for research into therapeutic maneuvers to reduce anti–interleukin-10 titers — for example, by means of B-cell and plasma-cell depletion (e.g., anti-CD19, anti-CD20, anti-CD38, or CD19 chimeric antigen receptor [CAR] T-cell therapy),29-31 plasma exchange, or blockade of the neonatal Fc receptor.32“

My take: Historically, in younger patients (6 or younger) and those with more severe inflammatory bowel disease, it has been common to evaluate for monogenetic diseases which may require different treatment approaches. For similar reasons, assessing for neutralizing autoantibodies against interleukin-10 is likely to become part of routine care.

Related study: Q Zhang Q, Shakweh E, Sharip M et al. The Lancet Gastroenterology & Hepatology, 2026; 0. Open Access! HLA-DRB1*01:03 in patients with inflammatory bowel disease: a genotype–phenotype association study Key findings:

  • Among 43,762 patients with IBD (21 839 with Crohn’s disease and 21 923 with ulcerative colitis or IBD unclassified), HLA-DRB1*01:03 carriage was observed in 2009 (4·6%) patients with IBD and associated with multiple severe outcomes …including colonic resection in patients with Crohn’s disease (odds ratio 1·35), colectomy in patients with ulcerative colitis or IBD unclassified (1·99), and perianal disease in both patients with Crohn’s disease (1·65) and patients with ulcerative colitis or IBD unclassified (1·70)

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Dr. Valeria Cohran: Short Bowel Syndrome/Intestinal Failure in Pediatrics 2026

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Recently, Dr. Valeria Cohran gave our group a terrific update on Short Bowel Syndrome (SBS)/Intestinal Failure (IF). My notes below may contain errors in transcription and in omission. Along with my notes, I have included many of her slides. Dr. Cohran has been a leader in intestinal rehabilitation. Among many accomplishments, she was the 2025 recipient of the 2025 Margaret Stallings NASPGHAN Distinguished Service Award.

Key points:

  • Most children with SBS/IF are able to taper off parenteral nutrition (PN). Even ~30% of those with extreme SBS (<10% of expected bowel length) are able to achieve enteral autonomy.
  • SBS/IF due to NEC has a generally more favorable outcome than other etiologies
  • Stoma takedown is associated with better outcomes (eg. more likely to taper off PN). (Raghu et al. JPEN. 2023;47:1047-55). Taking down stoma may be beneficial if unable to taper PN and in those developing liver disease
  • SBS/IF caretakers spend a median of 29 hrs/week managing PN, enteral nutrition, medications, and other tasks
  • In the nursery, one study reported that NICU patients with IF spent a median of 150 days and cost more than $500K
  • Overall, advances in SBS/IF management have been associated with lower death rates and lower intestinal transplant rates (~30 ITx last year), yet similar rates of achieving enteral autonomy
Overall, Group 1 SBS is least likely to achieve enteral autonomy
Intestinal length with maximal increase in first year of life
•N=362 children in over 26 centers world-wide, started 2018 (enrolled if PN >2 months)
Multi-organ effects of SBS
  • Fish oil based lipid emulsions do not always work; cirrhosis can still develop even with minimal biochemical marker alterations
  • IFALD mortality is associated with degree of conjugated hyperbilirubinemia, though we are not seeing this complication much with current management
  • GLP-2 can reduce PN requirements by more than 20% in the majority of those with SBS/IF and may help achieve enteral autonomy in about 20%. However, their use requires close monitoring for fluid overload and electrolyte disturbances
  • Lots of disparities noted along socioeconomic variables. For outpatient management, home nursing care is not available in some neighborhoods

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Reassuring Study of Infants Exposed to Biologics

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L Palomino et al. Clin Gastroenterol Hepatol 2026; 24: 1688-1701. Open Access! Psychomotor Development in Infants Following Maternal Exposure to Biologics: Results From the DUMBO Registry

Methods: DUMBO (NCT03894228) is an ongoing, prospective, multicenter, observational registry study supported by Grupo Español de Trabajo en Enfermedad de Crohn y Colitis Ulcerosa (GETECCU) which includes women with IBD whose pregnancy was known to the investigator before the 28th week of gestation. Psychomotor development of infants was assessed using the Spanish version of the Ages and Stages Questionnaire 3rd edition (ASQ-3) during the first year of life. 

Key findings:

  • Exposure to biologics in utero, had no impact on ASQ-3 scores at month 12.
  • Multivariate analysis revealed that preterm birth (odds ratio, 0.3; 95% confidence interval, 0.1–0.6) and maternal ulcerative colitis (odds ratio, 0.5; 95% confidence interval, 0.3–0.9) were associated with an increased risk of abnormal ASQ-3. 

Discussion Points:

  • “Active maternal inflammation during the periconception period and pregnancy has been associated with low birth weight, preterm delivery, small size for gestational age, spontaneous abortion, and stillbirths.3,4…Active maternal inflammation during the periconception period and pregnancy has been associated with low birth weight, preterm delivery, small size for gestational age, spontaneous abortion, and stillbirths.3,4“
  • “In infants born to mothers with IBD, exposure to biologics would be expected to reduce their exposure to inflammatory cytokines in utero, which could potentially mitigate the impact of maternal inflammation on psychomotor development… our study found no negative impact of biologics exposure on the psychomotor development of infants, either from exposure in utero or during breastfeeding. Furthermore, we observed higher ASQ-3 scores in the personal-social domain at 4 months and in the gross and fine motor domains at 12 months in biologics-exposed vs nonexposed children, possibly reflecting a beneficial effect of treatment in reducing maternal inflammation.”
  • “Data from the PIANO study further supports our findings. Mahadevan et al assessed psychomotor development in 206 children exposed to biologics (both anti-TNF and non-anti-TNF) in utero, and 92 controls, finding higher ASQ-3 scores in the exposed group.”

My take: Biologic exposure does not appear to impair psychomotor development in infants. While this study provides useful information, I am not impressed wtih with the Acronym DUMBO for this registry.

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Yesterday’s Peachtree Road Race Shirt

“Real-World” Impact of Vitamin D for Patients with Inflammatory Bowel Disease

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JA Sninsky et al. Clin Gastroenterol Hepatol 2026; 24: 1666-1674. Open Access! The Real-World Impact of Vitamin D Supplementation on Inflammatory Bowel Disease Clinical Outcomes

Methods: This was a retrospective cohort study of adult patients (n=5021) with IBD seen in the national Veterans Health Administration system from 2000 to 2023. The researchers used 3 different methods to try to determine causality of improved outcomes with supplementation of Vitamin D.

  1. “Difference-in-differences (DiD) approach to compare changes in clinical outcomes before and after vitamin D testing between patients who did and did not receive supplementation”
  2. “The regression discontinuity design leveraged the clinical threshold of 30 ng/mL serum 25-hydroxyvitamin D, comparing outcomes in patients just lower than and just higher than this cutoff, who are assumed to be otherwise similar”
  3. “The inverse probability weighting method adjusted for confounding by weighting patients based on their likelihood (propensity) of receiving vitamin D15“

Key findings:

  • The median 25-hydroxyvitamin D level was 23 ng/mL, and 41% received vitamin D supplementation
  • Vitamin D supplementation was associated with reduction in IBD-related emergency department visits by 2.17% (34.4% relative risk reduction; P = .007), hospitalizations by 2.64% (53.18% relative risk reduction; P = .003), and corticosteroid prescriptions by 1.29% (25.13% relative risk reduction; P = .066)

Discussion:

  • “Collectively, our data strongly suggest that vitamin D supplementation reduces the risk of IBD flare, underscoring its promise as an effective adjunctive therapy in clinical practice.”
  • “Vitamin D deficiency is prevalent among patients with IBD and is strongly linked to poor clinical outcomes, including higher rates of hospitalization and surgery. Patients with IBD are 64% more likely to be vitamin D deficient compared with healthy control subjects.29“
  • “Vitamin D deficiency is prevalent among patients with IBD and is strongly linked to poor clinical outcomes, including higher rates of hospitalization and surgery. Patients with IBD are 64% more likely to be vitamin D deficient compared with healthy control subjects.29“
  • “Although these findings support a strong association between vitamin D deficiency and worse clinical outcomes, they do not address whether supplementation itself mitigates the risk of adverse events, because disease severity confounds this relationship.33 Our study fills this knowledge gap and provides rigorous real-world data to support the effectiveness of vitamin D supplementation.”

My take: There have been large studies (eg. VITAL) study showing that Vitamin D supplementation does not help most people in the general population. In addition, many individuals with IBD who have low Vitamin D levels may see improvement in Vitamin D status by treating the IBD (without Vitamin D supplement). Yet, studies like this one by Sninsky indicate that Vitamin D supplementation is associated with improved outcomes in this retrospective cohort; the study methods likely indicate a causal effect of supplementation; however, a prospective randomized controlled study would be more definitive.

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Here’s Why CYP2C19 Testing May Be Helpful For Refractory Reflux

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Recent pediatric Rome V recommendations suggested the use of CYP2C19 testing in patients with reflux that was not responding to time-limited therapy (link: Rome V Pediatric Upper Gastrointestinal Disorders of Gut-Brain Interaction (Part 1)). The following retrospective study of adults (n=421) at an academic medical center provides a strong rationale.

L Creech et al. Clin Gastroenterol Hepatol 2026; 24: 1550-1557. Open Access! High Prevalence of CYP2C19 Rapid and Ultrarapid Metabolism Among Patients With Gastroesophageal Reflux Disease

Key finding:

  • 44% (n=184) of patients presenting to gastroenterology clinic with gastroesophageal reflux disease who underwent CYP2C19 genotyping were found to be rapid metabolizers (RMs) (38%) or ultrarapid metabolizers (6%)
  • The prevalence of Barrett’s esophagus/erosive esophagitis was higher among ultrarapid metabolizers (24%; n = 5/21) than among normal metabolizers (7%; n = 12/165; odds ratio, 3.5)
  • Among the 184 RMs, 79% (n = 146) had a change in management due to CYP testing results: 65% (n = 120) changed their medication (89 patients were switched to rabeprazole), 22% (n = 41) continued PPI therapy, and 14% (n = 26) increased their PPI dose

Discussion points:

Prevalence of CYP RMs in Other Studies:

  • “Ionovo et al studied over 2 million patients who underwent genetic testing using 23andMe and found that the rate of RMs (∗1/∗17) in the general population was 26.0%, and the rate of URMs (∗17/∗17) was 4.4%.25“
  • “Fricke-Galindo et al analyzed data from 138 studies of over 52,000 healthy volunteers from around the world.26 The highest rates of combined RMs and URMs were reported in the Middle Eastern populations (36%), followed by European (28.6%), African (16.8%), and Asian populations (3.4%).26 The prevalence was 26.7% in the United States.”
  • “Among GI clinical practice guidelines, the 2025 American Society for Gastrointestinal Endoscopy (ASGE) guideline was the first to suggest routine incorporation of CYP testing into the management of patients with GERD.30“
  • “PCABs offer a viable alternative to PPIs in patients who are RMs and should be considered accordingly. PCABs are also not dependent on preprandial dosing and thus are easier for patients to take. However, the cost of PCABs continues to be a limiting factor.”
  • Testing cost: “A typical out-of-pocket price of $250 to $400 and is covered by some insurance.39“
  • Limitations: The study population has a selection bias compared to the general population. Patients referred to a GI clinic are more likely to have treatment-refractory GERD and thus have higher rates of RMs.

My take: In patients with established GERD who are not responding to treatment, CYP testing may be helpful. This is probably true for patients with EoE as well. In patients with GERD who are RMs, options include changing to rabeprazole, higher doses, or possible use of PCABs.

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Pediatric Experience with Subcutaneous Infliximab

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EH Boute et al. Inflamm Bowel Dis 2026; 32: 1086–1096. Open Access! Persistence and safety of subcutaneous infliximab up to 1 year after switching from intravenous infliximab in pediatric inflammatory bowel disease: a multicenter real-world cohort study

Methods: This was a retrospective multicenter study we identified pediatric IBD patients (n=66 including 41 with Crohn’s disease) who switched to SC-IFX. Median age 16.5 years. Pre-switch, the median IV-IFX maintenance dose was 10 mg/kg every 6 weeks. There were only 6 patients with a weight <40 kg.

Key findings:

  • The initial SC-IFX regimen was 120 mg every other week in 62/66 patients (94%).  4 patients (6%) were initiated on 120 mg every week
  • SC-IFX persistence was 78% at 12 months post-switch, with 89% of patients persisting on IFX, either intravenous (IV) or subcutaneous (SC), at the end of follow-up
  • 17% (n=11) of patients experienced relapses. 6 patients underwent dose intensification (3 regained response), 3 patients switched to a different advanced therapy, and 3 patients received concomitant therapy
  • 11 patients (17%) discontinued SC-IFX treatment after a median of 7.0 months
  • 6 patients underwent SC-IFX dose intensification, with 3 successfully regaining clinical response
  • Regarding anti-drug antibodies (ADA), 3 out of 4 patients who were ADA positive on IV-IFX resolved post-switch
  • Three patients (3/66, 5%) experienced serious AEs requiring hospitalization, namely IgA-mediated nephropathy, pyelonephritis requiring IV antibiotics, and perianal fistula requiring seton drainage

Discussion:

  • “Compared to IV-IFX, SC-IFX provides higher and more stable serum concentrations, avoiding peak-trough variability, potentially lowering immunogenicity and offering greater flexibility in TDM.”
  • “Careful monitoring by the IBD team remains essential to ensure treatment adherence during and after the switch. In our cohort, most discontinuations (64%) were related to difficulties with the SC route, highlighting the importance of identifying the most suitable candidates.”

My take: More pediatric studies are needed. This study suggests that the effectiveness of SC-IFX in children will be similar to the effectiveness in adults. As more patients receive SC therapy, it will be particularly important to work on adherence with scheduled dosing, lab monitoring, and careful followup visits; all of these can be more difficult with SC compared with IV infusions.

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Data Insufficient to Recommend Immobilized Lipase Cartridge Use in Children with Short Bowel Syndrome

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E Khenner et al. J Pediatr Gastroenterol Nutr. 2026;82:1488–1494. Open Access! Retrospective chart review of immobilized lipase cartridge use in children with short bowel syndrome

***Three of the authors of this study are/were employed or receive research support from Alcresta Therapeutics, Inc.

This small retrospective single-center study reports the use of in-line immobilized lipase cartridges (ILC) in 14 patients; 10 were PN-dependent, and four had enteral autonomy (Table 1). The mean age at the start of ILC use was 6 years (range 2–15 years). Mean estimated residual small bowel length was 66 cm (range 11–190 cm; n = 13). Eight patients received peptide-based EN and 6 elemental EN, typically delivered over 12–24 h.

Key findings:

  • In 9 PN-dependent patients (with Type II or III SBS), mean PN use at baseline was 45.3 kcal/kg/day (59% of supplemental nutrition). At final follow-up, mean PN use decreased by 10.6 kcal/kg/day (15.5%) and mean EN use increased by 6.0 kcal/kg/day (39.9%) after 3.8 to 23.9 months of ILC use.
  • In 4 patients with enteral autonomy (all Type III SBS), mean weight z-score improved by 0.60 and mean EN use decreased by 6.9% after 2.7 to 5.3 months of ILC use. The decrease from baseline in mean EN use at final follow-up was driven by data from one patient (#12) who had poor compliance with tube feeding.
  • None of these changes are statistically significant.

Discussion:

  • “There are limitations to ILC use in children with SBS: not all SBS patients receive EN, bolus feeding with ILC is limited to flow rates ≤400 mL/h, and ILC is not compatible with high fiber enteral formulas.6“
  • “Blenderized tube feeding is becoming the preferred method of enteral feeding in pediatrics.17 Although the use of blenderized tube feeds in children with SBS is associated with improved GI symptoms as well as a reduction in PN dependence, some patients experience intolerance or lack of weight gain.18, 19“
  • The authors conclusions: “ILC offers a low-risk option to potentially advance enteral autonomy or weight gain in some children with SBS.”

My take: I am not convinced that ILC is worthwhile for pediatric patients with SBS. I have received questions about this from our neonatal colleagues. When I have questioned leaders of several intestinal rehab centers, they have stated there is no solid data supporting its use. When I have asked the manufacturer to provide data in children with SBS less than two years of age, I have heard no response. The cost (without insurance) likely exceeds $9,000/month if using two ILCs per day. The use of this expensive product needs to be carefully evaluated in a prospective randomized trial.

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BAPS Shri Swaminarayan Mandir, Atlanta (Hindu Temple)

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