Category Archives: Pediatric Gastroenterology Nutrition Topic

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

Related blog posts:

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)

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

The Mother of Invention: Central Line Vest to Reduce Complications

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RE St Pierre-Hetz et al. JPGN Reports. 2026;1–6. A novel central line securement vest reduces line trauma and improves quality of life in patients with intestinal failure

This single center study compared a novel central line securement vest (n=12) to traditional securing methods (n=11).

Key findings:

  • The vest group had lower rates of line trauma during the period of vest use versus prior to its use. The rates of infections and replacements were a little lower during vest use (not statistically-significant) compared to prior to use. The control group had similar rates of trauma, infections, and replacements before and during the study period.
  • The vest group had much higher rates of line issues prior to vest use than the control group
  • 5 of the 12 vest patients discontinued use before the planned 12-month evaluation

The story behind the inventor is fascinating as well. “Gus Gear” was “founded by Sarah Palya over a decade ago after her son Gus was diagnosed with intestinal failure.” Due to this, he required long-term parenteral nutrition. “Gus also has autism, and his constant movement and activity put him at risk for accidental line trauma and infection. Sarah looked for ways to secure his central line while also allowing him to live as normally as possible, without severely restricting his activity. Finding no solutions, she sat down at her sewing machine and created the very first Gus Gear Central Line Vest to secure his catheter.” The company now makes a similar product to secure GTubes, LOCK 3000 Belt.

My take: This small study supports the use of this product, especially in those prone to line trauma: Gus Gear Central Line Vest® (Dr. Hochman has no commercial ties to this company)

Origin of the expression: “Necessity is the mother of invention“

Related blog posts:

Rashelle Berry: From Tube to Taste

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We had a terrific lecture given to our group by Rashelle Berry. She is a pediatric dietitian specializing in feeding disorders, enteral nutrition, and tube weaning. She practices within the Feeding Program at Children’s Healthcare of Atlanta, partnering closely with a wide variety of disciplines to care for children with significant feeding challenges and GI-related nutrition concerns. My notes below may contain errors in transcription and in omission.

Key Points:

  • Families expectations are often at odds with dealing with tube feeding which makes it more difficult
  • Parents have strong desire to achieve all oral feedings and often look for advice outside of clinical visits
  • Hunger alone is not sufficient to transition off tube feedings
  • Prior to attempts to stop tube feedings, it is important to assess safety and to align feeding patterns to be more physiologic. This includes offering feeds via bolus typically every 3 hours and stopping continuous feedings
  • Hyperosmolar feedings can contribute to GI symptoms
  • Changing formula to improve tolerance can result in quick symptom improvement (1-2 days)
  • Many children with tube feedings are overfed. This can contribute to poor hunger as well as initial weight loss when transitioning off tube feeds
  • Two main options to advance oral feedings: 1. Offer oral feeds prior to tube feeds and reduce tube feedings based on oral intake 2. Plan to reduce tube feedings by a set amount, typically 10-30% and follow to see if oral intake improves
  • Expect some weight loss during transition; if mild weight loss, most often continue to follow closely
In Step 2, these are some of the aspects indicating tolerance

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Randomized Control Trial of the Modified Crohn’s Disease Exclusion Diet (CDED)

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RS Boneh et al. Clin Gastroenterol Hepatol 2025; 23: 2001-2011. Open Access! Modified Crohn’s Disease Exclusion Diet Maintains Remission in Pediatric Crohn’s Disease: Randomized Controlled Trial

In this “DIETOMICS” study with 56 children with mild-to-severe Crohn’s disease, after a 2 week exclusive enteral nutrition (EEN) diet, 30 patients were randomized to CDED and 26 to EEN.

Diet intervention: The CDED group followed 3 diet phases over 24 weeks: phase 1 (weeks 3–8) supplemented with 50% PEN; phase 2 (weeks 9–14) with 25% PEN, as described previously16; and phase 3 (weeks 15–24) with gradual introduction of more foods, including 1 and 2 free meals per week from weeks 15 and 18, respectively.17 Patients in EEN group received 8 weeks of EEN followed by gradual introduction of free diet with 25% PEN up to week 24.

Key findings:

This study with a relatively small number of enrolled patients had a lot of variables in dietary parameters. “An additional potential confounder in this study is the use of IMM therapy. Although both groups were recommended to initiate IMM therapy from weeks 4 to 5 to maintain remission, several CDED patients opted for monotherapy with CDED and preferred to delay medication initiation. Interestingly, 90% of patients on CDED without IMM therapy were in remission at week 14 and 100% were in remission at week 2” (possibly impacting decision not to use IMM).

My take: This study adds another piece of information to the puzzle on dietary therapy for Crohn’s disease. The authors note the following: “while CDED shows promise as a standalone therapy in some cases, in more severe cases it may be more appropriately as an adjuvant to top-down treatment with early anti-TNF.4 Recent research and guidelines advocate for a top-down approach (anti-TNF ± nutrition) for more severe disease, emphasizing the integration of anti-TNF therapy with nutrition.8,29 This approach is crucial during critical growth stages, as the conventional step-up method may lead to ineffective use of IMM with prolonged steroid exposure and growth issues.12“

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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

Are Shortages of Premature Formulas Likely Due to Necrotizing Enterocolitis Lawsuits?

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DR Shores et al. J Pediatr Gastroenterol Nutr. 2025;81:158–161. Navigating the blame game: Exploring necrotizing enterocolitis, preterm nutrition, and the ramifications of a formula shortage

Key points from this commentary:

  • “Recent lawsuits involving preterm infant formula manufacturers in the United States (Abbott and Mead Johnson) … [a] formula shortage crisis … might ensue if these formulas are pulled from the market”
  • “Breast milk has long been associated with protection against NEC, possibly due to bioactive molecules that maybe protective. However, infants fed exclusively breastmilk can still develop NEC, highlighting a multifactorial etiology. Mother’s own breast milk provides the best protection against NEC and is the ideal primary form of nutrition for preterm infants…pasteurized donor breast milk provides some protection against NEC and should be offered if mother’s own breast milk is not available”
  • “Although preterm formula does not protect against NEC, it is the healthcare standard, assuming all medical comorbidities are taken into consideration for individualized care…preterm infant formulas that are specifically formulated to provide the calories, protein and micro-nutrient needs of preterm infants”
  • “Placing all the blame for the development of NEC on preterm formula manufacturers is not supported by science and is thus unfounded”
  • “For infants without access to mother’s own or donor breast milk, specialized formulas remain critical to their nutrition and survival….Vilifying formula companies risks provoking further shortages of essential specialized formulas, which could directly harm the very babies we all aim to protect”

Related blog posts:

National Covid Memorial Wall in London is a visual representation of the UK’s catastrophic loss to Covid-19. There are more than 240,000 individually hand-painted red hearts, each representing a person who died in the UK with Covid-19 as a direct cause of death. Many of the hearts on the Wall have been personalized with individual message

Increased Mortality in Pediatric Steatotic Liver Disease Plus One

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From UCSD 4/28/25: Children with Liver Disease Face Dramatically Higher Risk of Early Death (via Jeff Schwimmer’s X feed)

The findings, published April 22, 2025 in Hepatology, the scientific journal of the American Association for the Study of Liver Diseases, come from the Longitudinal InVestigation Evaluating Results of Steatosis (LIVERS) study, which followed 1,096 children over an average of 8.5 years. Nearly half of all deaths in the cohort were liver-related, and the overall mortality rate was 40 times higher than that of similar peers in the general U.S. population...

The retrospective cohort study used medical records and National Death Index data to follow children ages 2 to 18 who were diagnosed with MASLD between 2000 and 2017. Over an average of 8.5 years of follow-up, 3.4% of children had died…

In addition to the risk of early death, many children in the study developed serious health problems while still in their teens or twenties. These included high blood pressure (14%), obstructive sleep apnea (9.5%) and type 2 diabetes (7.3%). Problems with blood fats, such as high triglycerides or low HDL, were even more common — making dyslipidemia, the presence of abnormal levels of fats (lipids) in the blood, the most frequent complication overall.

Link to study: JB Scwimmer et al Hepatology ():10.1097/HEP.0000000000001357. Long-term mortality and extrahepatic outcomes in 1,096 children with MASLD: A retrospective cohort study

My take: Since this was a retrospective single center study, the severity of the findings may be different with a more-representative national cohort. Nevertheless, this study shows that MASLD has serious consequences including premature death and numerous comorbidities.

Related article: J Panganiban et al. Obesity Pillars 2025: 14. https://doi.org/10.1016/j.obpill.2025.100164. Open Access! Metabolic dysfunction-associated steatotic liver disease (MASLD) in children with obesity: An Obesity Medicine Association (OMA) and expert joint perspective 2025. This Obesity Medicine Association (OMA) Expert Joint Perspective is a comprehensive review (~28 pages) of steatotic liver disease (SLD), metabolic dysfunction-associated steatotic liver disease (MASLD), and metabolic dysfunction-associated steatohepatitis (MASH) in children with obesity.

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PICNIC Trial Results: Can Antimicrobial PICC Lines Reduce Central Line Infections?

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AJ Ullman et al. NEJM 2025; 392: 161-172. A Comparison of Peripherally Inserted Central Catheter Materials

Background: Advances in material technology have introduced coatings and altered surfaces with purported antithrombotic and antiinfective properties to be used with polyurethane PICCs…A Cochrane review11 that included data from 42 randomized, controlled trials and 10,405 patients concluded that there was high-quality evidence showing that antimicrobial central venous catheters reduced the risk of bloodstream infections (risk ratio, 0.62)…On the basis of this indication, chlorhexidine-coated PICCs have been introduced to clinical practice… We conducted the Peripherally Inserted Central Catheter Innovation to Reduce Infections and Clots (PICNIC) trial to test the hypothesis that the risk of device failure due to complications would be lower with two technological innovations (hydrophobic and chlorhexidine PICCs) than with standard polyurethane PICCs.”

Methods: The authors conducted a randomized, controlled, superiority trial in three Australian tertiary hospitals. Adults and children (n=1098) who were referred for PICC placement were assigned in a 1:1:1 ratio to receive a hydrophobic or chlorhexidine PICC or a standard polyurethane PICC and were followed for 8 weeks

Key findings:

  • Device failure occurred in 21 of 358 participants (5.9%) in the hydrophobic group, in 36 of 363 (9.9%) in the chlorhexidine group, and in 22 of 359 (6.1%) in the standard-polyurethane group
  • Complications from any cause during the period of PICC placement occurred in 77 participants (21.5%) in the hydrophobic group, in 140 (38.6%) in the chlorhexidine group, and in 78 (21.7%) in the standard-polyurethane group (odds ratio, hydrophobic vs. standard polyurethane, 0.99)

Discussion point: This trial was conducted during the COVID epidemic which may have altered the results due to a focus of mitigating infectious exposures.

My take (borrowed from authos): “The risk of device failure due to noninfectious or infectious complications was not lower with hydrophobic or chlorhexidine PICCs than with standard polyurethane PICCs.”

Related blog posts:

Key Advances in 2024: An Overview from GutsandGrowth (Part 1)

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This year I had the opportunity to give a lecture to our group that reviewed much of the important advances that happened in 2024. Here are some of the slides (if you have any trouble reading the slides, you can search for the original blog post using author name).

Inpatient Admission to Achieve Enteral Autonomy in Children with Intestinal Failure

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Happy New Year!

——-

A Fialdowski et al. J Pediatr 2024; 275: 114226. Achieving Enteral Autonomy in Children with Intestinal Failure Following Inpatient Admission: A Case Series

This retrospective review identified 6 patients (out of 153) who were weaned off parenteral nutrition (PN) as part of an inpatient admission.

Key findings:

  • Except for one admission of 8 days, all of these patients required a prolonged admission 1-5 months.
  • Two of the patients were receiving PN primarily due to abdominal pain in the absence of a recognizable motility disorder.
  • Two of the patients had a suspected factitious disorder imposed on a medical disorder; one received this diagnosis.
  • All patients had chronic feeding intolerance despite favorable prognostic factors including underlying necrotizing enterocolitis (n=1), preserved ileocecal valve (n=5), longer bowel length (n=5), and retention of entire colon (n=5).
  • Post-pyloric feeds aided conversion to EN in 5 patients.

My take: In order to achieve enteral autonomy, hospital admission may be needed for patients who require long-term PN despite favorable prognostic factors.

  • Be prepared for a lengthy stay
  • Anticipate the need for an interdisciplinary team (eg. nutrition, social work, and others).

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From the Lake by Georgia O’Keefe (1924). High Museum, Atlanta.