Inflammatory Bowel Disease
Overview
Inflammatory bowel disease (IBD) is a chronic immune-mediated disorder of the digestive tract in which the body inappropriately attacks its own intestines. Symptoms vary depending on the location and extent of inflamed bowel, but usually include chronic diarrhea that is sometimes bloody, abdominal pain, and weight loss. Extra-intestinal conditions may involve the mouth, skin, joints, liver, or eyes. IBD has the potential to affect nutrition, growth, and puberty.The term IBD covers 2 disease entities that can have significant clinical overlap: ulcerative colitis (UC), in which inflammation affects mostly the large intestine, and Crohn’s disease (CD), where any portion of the digestive tract from mouth to anus can be affected. Children with IBD who do not fit either category (≈15%) are diagnosed with “indeterminate colitis” or inflammatory bowel disease unclassified type (IBD-U).
Other Names & Coding
Indeterminate colitis
Regional enteritis
Ulcerative colitis
K50, crohn's disease [regional enteritis]
K51, ulcerative colitis
K52, other and unspecified noninfective gastroenteritis and colitis
Multiple digits indicating primary location of inflammation can be used with codes K50, K51, and K52. See ICD-10 for Noninfective Enteritis and Colitis (ICD10Data.com) for coding details.
Prevalence
The prevalence of CD and UC in children younger than 20 years is 1:2,326 and 1:3,571, respectively. [Kappelman: 2007] IBD peaks around age 20 and again at age 60; nearly 25% of patients with IBD present before the age of 20. [Wong: 2008]Genetics
The DNA of patients with IBD has been extensively studied; while genetics is sometimes responsible for developing the condition, about 85% of IBD cases are caused by environmental factors.Prognosis
The inability to absorb adequate calories and nutrients can lead to failure to thrive, growth retardation, abnormal sexual maturation, and vitamin and micronutrient deficiencies. Chronic inflammation leads to anemia and, in CD, to abscess, stricture, and fistula formation. Both CD and UC carry an increased risk for colorectal cancers, particularly when disease has been present for many years. Significant limitations in school, sports, and other activities occur with flares or with poorly controlled disease. The social stigma associated with fecal urgency or surgical ostomy can be extreme. Some children develop comorbid anxiety and depression.Practice Guidelines
Turner D, Levine A, Escher JC, Griffiths AM, Russell RK, Dignass A, Dias JA, Bronsky J, Braegger CP, Cucchiara S, de Ridder
L, Fagerberg UL, Hussey S, Hugot JP, Kolacek S, Kolho KL, Lionetti P, Paerregaard A, Potapov A, Rintala R, Serban DE, Staiano
A, Sweeny B, Veerman G, Veres G, Wilson DC, Ruemmele FM.
Management of pediatric ulcerative colitis: joint ECCO and ESPGHAN evidence-based consensus guidelines.
J Pediatr Gastroenterol Nutr.
2012;55(3):340-61.
PubMed abstract
Ruemmele FM, Veres G, Kolho KL, Griffiths A, Levine A, Escher JC, Amil Dias J, Barabino A, Braegger CP, Bronsky J, Buderus
S, Martín-de-Carpi J, De Ridder L, Fagerberg UL, Hugot JP, Kierkus J, Kolacek S, Koletzko S, Lionetti P, Miele E, Navas López
VM, Paerregaard A, Russell RK, Serban DE, Shaoul R, Van Rheenen P, Veereman G, Weiss B, Wilson D, Dignass A, Eliakim A, Winter
H, Turner D.
Consensus guidelines of ECCO/ESPGHAN on the medical management of pediatric Crohn's disease.
J Crohns Colitis.
2014;8(10):1179-207.
PubMed abstract / Full Text
Critch J, Day AS, Otley A, King-Moore C, Teitelbaum JE, Shashidhar H.
Use of enteral nutrition for the control of intestinal inflammation in pediatric Crohn disease.
J Pediatr Gastroenterol Nutr.
2012;54(2):298-305.
PubMed abstract
Roles of the Medical Home
The medical home should:- Monitor for signs of ongoing disease and exacerbation.
- Monitor for side effects of medications.
- Help ensure adequate catch-up growth.
- Monitor for appropriate pubertal development.
- Screen for physical findings of vitamin and mineral deficiencies.
- Screen for comorbid depression and anxiety.
- Evaluate illnesses in patients on immune-modulating medications.
- Work with the patient and family to encourage therapeutic compliance.
- Perform routine health screening.
- Assist family with eventual transition to adult care.
Development of a 504 Plan may include immediate/discreet access to bathroom, stop the clock testing, access to healthy snacks and beverages, plans for unintended late arrivals to school, and alternative activities for physical education class. School Accommodations: IEPs, 504s, & Health Care Plans provides tips for collaborting with school personnel to help ensure appropriate education-related services.
Clinical Assessment
Pearls & Alerts for Assessment
Most abdominal pain in children is not IBDThe child with gassy abdominal pains and bloating, nonfocal periumbilical pain, no diarrhea, no fecal urgency, and normal growth is unlikely to have IBD, especially if routine bloodwork, including an inflammatory marker (ESR or CRP), is normal. Nearly all of these patients have constipation and/or functional abdominal pain. Most hematochezia in children is from constipation.
Screening
For Complications
Patients on immunosuppressive medications should have bloodwork monitored by their gastroenterologist no less than every 3 months to look for liver damage, pancreatitis, low white blood cell count, and other complications of immunosuppression.Presentations
Presentation depends, in part, upon the location and extent of the inflamed bowel. Inflammation in CD may occur anywhere along the GI tract. Most individuals with CD have inflammation in the distal ileum and cecum (~70%). UC can have variable severity. By definition, the inflammation in those with UC always involves only the large bowel. Either disorder can have associated extraintestinal symptoms. In both conditions, the inflammation manifests primarily as abdominal pain and diarrhea. For the purposes of this review, patient presentations will be divided into mild intestinal, moderate/severe intestinal, and primarily extraintestinal patterns.Mild intestinal presentation: Approximately 60% of children with IBD present, typically in an outpatient setting, with mild colonic and distal small bowel symptoms, and chronic diarrhea, cramps, and abdominal pains. Mild blood in the stools is more characteristic of UC, but also present in ~30% of CD. Children with mild presentation have normal vital signs, look well, and have unremarkable physical exams.
Moderate/severe intestinal presentation: Approximately 30% of children with IBD present with moderate or severe colonic and distal small bowel symptoms that may include frequent and/or grossly bloody stools, cramps, fecal urgency, fevers, weight loss, and some degree of general systemic illness. Vital sign instability, dehydration, anemia, or the need for IV narcotic pain control may lead to hospitalization. A distended or tender abdomen, particularly with any signs of peritonitis, requires urgent referral for imaging and evaluation by the most experienced team available—ideally, a tertiary care center with a pediatric surgeon. Complications of IBD, such as perforation, obstructive strictures, and toxic megacolon, are surgical emergencies.
Primarily extraintestinal presentation: About 10% of children with IBD present with extracolonic symptoms. The most common is growth failure. IBD deserves consideration in an appropriately aged patient with otherwise idiopathic failure to thrive (low weight for age with or without low height for age, or low weight for height). A pattern of chronic nausea, vomiting, and anorexia is seen in CD with stomach or proximal small bowel involvement. Some children with CD present with just perianal disease. Additional symptoms may include any combination of fatigue, malaise, monoarticular arthritis or arthralgia, recurrent oral aphthous ulceration, erythema nodosum, pyoderma gangrenosum, anemia, hepatitis, and digital clubbing.
Diagnostic Criteria
Diagnosis is usually made by a pediatric gastroenterologist and pathologist. It is based on endoscopic and histologic data, with a suggestive history and physical exam, and after exclusion of infectious etiology. Definitive diagnosis requires all 3 of the following:- Clinical symptoms (diarrhea, rectal bleeding, abdominal pain, weight loss or growth disturbance, complicated perianal disease, and/or fevers)
- Appropriate time course (symptoms on 2 or more occasions separated by at least 8 weeks, or ongoing symptoms for at least 6 weeks)
- Objective evidence of inflammation on endoscopy, radiology, and/or histology
Differential Diagnosis
Acute symptoms: Infection is the primary alternative diagnosis, particularly when symptoms present acutely in an otherwise healthy child who has no growth disturbance. Since IBD and acute infection cannot be distinguished by clinical criteria alone, stool studies should be performed to rule out infection prior to initiation of immunosuppressive medications or further (and more expensive) workups.- Alternative considerations: Bacteria (Clostridium difficile, Salmonella, Shigella. Campylobacter, Yersinia, Aeromonas, Enterohemorrhagic E. coli, and Aeromonas) and protozoa (including Entamoeba histolytica, Blastocystis hominis, Cryptosporidium and Giardia species), which can present similarly to IBD.
- Alternative considerations: irritable bowel syndrome, constipation, and celiac sprue
Growth failure: Although unusual, the first presentation of IBD may be growth failure alone. The differential diagnosis for a child presenting primarily with poor growth is quite broad.
- Alternative considerations: celiac disease, thyroid dysfunction, cystic fibrosis, giardia infection, anorexia or other eating disorders, adrenal insufficiency, chronic kidney disease, and malignancy can manifest in this way.
Comorbid & Secondary Conditions
Primary sclerosing cholangitis is liver inflammation and scarring that occurs in >10% of Utah patients with ulcerative colitis. [Deneau: 2013] Other conditions are less common, including arthritis, uveitis, erythema nodosum, pyoderma gangrenosum, lymphedema, and venous thromboses.History & Examination
- Daily diarrhea
- Nighttime stooling
- Fecal urgency or tenesmus
- Persistent bloody stools
- Poor weight gain or linear growth failure
- Right lower quadrant tenderness on exam
Current & Past Medical History
Current and past history:- Fecal urgency, especially if child wakes from sleep to have an urgent bowel movement
- Blood or mucus in stools (after constipation has been excluded)
- Growth disturbance
- Pubertal delay
- Fevers, anorexia, malaise, fatigue (signs of systemic inflammation)
- Recurrent oral or genital ulcerations (extraintestinal manifestations)
- Arthritis, especially monoarticular, large joint, and primarily early-morning (extraintestinal manifestations)
- Rashes (pyoderma gangrenosum or erythema nodosum)
- Eye inflammation (anterior uveitis)
Developmental & Educational Progress
Monitor school progress, which may reflect symptom control—those who miss more than a little school due to exacerbations may have difficulty keeping up. Behavior problems may reflect depression or problems with peers (perhaps due to symptom manifestations at school).Physical Exam
General
Monitor for fecal urgency, nighttime stooling, abnormal stools, fevers, malaise, fatigue, oral or genital ulcers, symptoms of arthritis, and rashes.Growth Parameters
Monitor height, weight, and weight for height or BMI: Low weight for age, with or without low height for age, or a low weight for height may reflect growth failure caused by IBD. Chart height, weight, and weight for height or BMI every 6 months. Watch for excessive weight gain in children taking steroids. Delayed pubertal development may reflect nutritional deficiency or chronic inflammation.Skin
Check for deep ulcerative lesions (pyoderma gangrenosum) or erythema and subcutaneous nodularity, often most prominent on the pretibial area (erythema nodosum). Also, check for striae if taking steroids.HEENT/Oral
Check mouth/oropharynx for ulcerations, suggesting CD; cracked lips; beefy macroglossia, suggesting vitamin/mineral deficiency associated with malnutrition; and tooth enamel erosion, suggesting self-induced vomiting that might be seen in anorexia nervosa or another condition. Pale conjunctivae may reflect anemia.Abdomen
Expect a normal exam with mild disease. RLQ tenderness can be a specific feature of CD with proximal colon or distal rectal involvement, whereas LLQ pain is more likely due to rectosigmoid inflammation, often associated with constipation. Isolated epigastric pain in CD is rare. RUQ pain is also unlikely in IBD and may be suggestive of gallbladder disease or functional dyspepsia. Peritoneal signs can be suggestive of severe disease and complication, such as perforation.Anal skin tags (especially off the sagittal plane), fissures, fistulae, ulcers, or generalized inflammation suggests CD. Visual inspection of the anus is frequently skipped, but it is critical to perform: 1:4 patients with CD has rectal involvement that may be isolated, or that may be an initial manifestation of more diffuse disease. Abdominal tenderness may reflect active disease.
Extremities/Musculoskeletal
Associated findings include clubbing (suggesting chronic inflammation), arthritis (monoarticular, large joint, nonerosive), brittle nails or spoon nails (suggesting vitamin/mineral deficiency associated with malnutrition), and finger ulcerations (suggesting self-induced vomiting, which may be seen in individuals with anorexia nervosa).Testing
Laboratory Testing
Exclusion of infectious etiology is the first step in the workup. Infection should be reliably excluded before embarking on a more costly workup and initiation of immunosuppressant medications. Clostridium difficile toxin assay, routine stool culture, and a microscopic examination for ova and parasites are generally sufficient in covering the most common organisms with presentations similar to IBD. More cultures may be indicated if there is supportive history.Current serologies, such as the Prometheus IBD-7 panel, lack the sensitivity and specificity to make them useful to distinguish among IBD and other disorders. Antibody panels such as ANCA/ASCA are expensive, lack sufficient positive and negative predictive value, and are not recommended.
In children with IBD, hemoglobin and ESR are the most likely routine blood tests to be abnormal. Elevated white count, and high or low platelets, can be seen. Serum albumin (half-life is about 3 weeks) may be low as a result of prolonged inflammation. A subset of patients with mild IBD will have normal labs.
Imaging
Imaging of the small bowel may identify lesions suggestive of CD. The best radiographic studies are either CT enteroclysis, which requires NJ tube placement for contrast infusion directly into the small bowel, or MRI of the small bowel, which requires rapid ingestion of large volumes of oral contrast. Capsule endoscopy, in which the patient swallows a camera pill that can image the entire GI tract, is available at some centers.Specialty Collaborations & Other Services
Pediatric Gastroenterology (see RI providers [19])
Refer to confirm the diagnosis and to assist with management.
Nutrition Assessment Services (see RI providers [3])
Periodic visits may help with surveillance and prevention of nutritional deficiencies.
Treatment & Management
Pearls & Alerts for Treatment & Management
Test for tuberculosis before use of biologic agentsChildren should be tested for tuberculosis prior to receiving biologic agents (Infliximab and adalimumab monoclonal antibodies), and they should be monitored for opportunistic infections.
Live virus vaccinationsNo data supports avoidance of live virus vaccines in children with IBD, and a recent study suggests that the varicella vaccine does not appear to cause problems, although they should be used with caution. [Lu: 2010] However, live virus vaccines cannot be given during, or within 8 weeks of, starting immunosuppression with adalimumab or infliximab. These include nasal spray forms of the influenza vaccine, varicella, and MMR. Other vaccines on the standard immunization schedule can be safely administered.
Surgical emergenciesComplications of IBD, such as perforation, obstructive strictures, and toxic megacolon, are surgical emergencies.
How should common problems be managed differently in children with Inflammatory Bowel Disease?
Viral Infections
Most cases of viral respiratory and gastrointestinal infections pass normally in children with IBD, even in patients on immunosuppressive medications. Yet, care must be taken with chicken pox or zoster rash exposures in patients on biologic medications: Some patients require prophylactic antiviral medicines. Care must also be taken with EBV (mono) infections, which can evolve into serious systemic inflammatory responses in the spectrum of hemophagocytic lymphohistiocytosis.Gastroenterologist should be contacted immediately for exposure to virus, and patients on immunosuppression should be treated with antivirals for documented positive tests of influenza viruses.
Bacterial Infections
Patients on immunosuppression who develop a chronic cough should be worked up for tuberculosis, histoplasmosis, coccidiomycosis, and blastomycosis depending on exposure history.Over the Counter Medications
Non-steroidal anti-inflammatory medicines (NSAIDs) like ibuprofen (Advil, Motrin), should be avoided in people with IBD since they may cause disease flares.Systems
Gastro-Intestinal & Bowel Function
Specific Therapies
- Biologic agents – Infliximab and adalimumab are expensive monoclonal antibodies directed against tumor necrosis factor and are used in moderate and severe disease that is refractory to other medications. These agents are associated with a risk for lymphoproliferative disorders and opportunistic infections. All patients need screening for tuberculosis prior to initiation of therapy. Biologic agents are probably the most effective medicines for all types of IBD, and the trend in treating IBD is to get patients who are not in remission with other therapies onto biologic medicines as soon as possible.
- Aminosalicylates – Sulfasalazine and mesalamine are not systemically absorbed and, when taken orally or rectally, provide topical anti-inflammatory effects at the site of diseased bowel. They can induce remission in mild-moderate UC. Sulfa products may cause dose-dependent adverse reactions, but non-sulfa alternatives are much more expensive. Sulfasalazine is the only 5-ASA product that is available as a suspension.
- Antibiotics – Ciprofloxacin and/or metronidazole are effective primarily in CD, especially with perianal involvement. In addition to elimination of some bacteria to which the intestinal immune system is inappropriately responding, they may have anti-inflammatory and antioxidant properties.
- Corticosteroids – These provide potent systemic anti-inflammatory effects and can induce remission in moderate or severe IBD, though at the cost of various sequelae of long-term use (Cushing syndrome and hypertension). Steroids are not a long-term solution for IBD; patients “stuck” on daily doses of steroids, or who require more than one prolonged taper of steroids, should be stepped up to a stronger class of immunosuppression.
- Probiotics – Specific combinations of multiple bacterial strains, such as VSL-3, may be effective in helping to induce remission in those with UC, but they are not effective monotherapy. They are available online without a prescription, but are expensive ($150-$300 monthly, depending on dose).
- Azathioprine/6-mercaptopurine – These immunosuppressants are useful in combination with steroids to induce remission, and then as monotherapy after steroid taper. Patients are followed for bone marrow suppression and hepatotoxicity. Idiosyncratic pancreatitis can occur.
- New agents – IBD is a relatively common adult gastrointestinal problem, and quite a bit of money is directed at developing new drugs. As of now, these medicines are at least several years away from widespread, safe pediatric use, but there is hope for newer, less-toxic agents.
Specialty Collaborations & Other Services
Pediatric Gastroenterology (see RI providers [19])
Timing of visits will depend on disease severity and may be needed every 1–2 months while starting therapy, decreasing to every 6–12 months for children in remission.
Surgery
Specialty Collaborations & Other Services
General Pediatric Surgery (see RI providers [5])
Referral may be necessary if there is an insufficient response to medical therapy.
Nutrition/Growth/Bone
Specialty Collaborations & Other Services
Nutrition Assessment Services (see RI providers [3])
Routine visits may help prevent nutritional deficiencies in at-risk children.
Mental Health/Behavior
Specialty Collaborations & Other Services
Developmental - Behavioral Pediatrics (see RI providers [11])
Counseling can help children and teens deal more effectively with the issues of living with a chronic disease.
Complementary & Alternative Medicine
Issues Related to Inflammatory Bowel Disease
No Related Issues were found for this diagnosis.Ask the Specialist
Can NSAIDs be used in IBD patients?
There is a theoretical risk of exacerbating intestinal inflammation with chronic, or even acute, NSAID use. We tell all patients to avoid these drugs and use acetaminophen instead.
Which vaccinations are contraindicated in IBD patients?
Live virus vaccines cannot be given during, or within 8 weeks of, starting immunosuppression with Humira (adalimumab) or Remicade (infliximab). These include nasal spray forms of the influenza vaccine, varicella, and MMR. Other vaccines on the standard immunization schedule can be safely administered at any time.
How do I manage a fever in an immunosuppressed patient?
Subacute fevers associated with symptoms of a viral upper respiratory infection, gastroenteritis, or a general viral syndrome are generally benign and do not need extensive workup. Fevers lasting longer than 5-7 days, especially those associated with chronic cough, bone pain, or chickenpox, and especially in patients on biologic agents, should be evaluated semi-urgently by the patient's gastroenterologist to exclude opportunistic infection or malignancy.
Resources for Clinicians
On the Web
Inflammatory Bowel Disease (OMIM)
Information about clinical features, diagnosis, management, and molecular and population genetics; Online Mendelian Inheritance
in Man, authored and edited at the McKusick-Nathans Institute of Genetic Medicine, Johns Hopkins University School of Medicine
Helpful Articles
PubMed search for inflammatory bowel diseases in children, last 2 years.
Fell JM.
Update of the management of inflammatory bowel disease.
Arch Dis Child.
2012;97(1):78-83.
PubMed abstract / Full Text
Hommel KA, Greenley RN, Maddux MH, Gray WN, Mackner LM.
Self-management in pediatric inflammatory bowel disease: A clinical report of the North American Society for Pediatric Gastroenterology,
Hepatology, and Nutrition.
J Pediatr Gastroenterol Nutr.
2013;57(2):250-7.
PubMed abstract / Full Text
Leung Y, Heyman MB, Mahadevan U.
Transitioning the adolescent inflammatory bowel disease patient: guidelines for the adult and pediatric gastroenterologist.
Inflamm Bowel Dis.
2011;17(10):2169-73.
PubMed abstract / Full Text
Clinical Tools
Letters of Medical Necessity
Appeal Letters (CCFA)
Templates for requesting school accommodations and appealing denials of funding for medications and procedures; Crohn's &
Colitis Foundation of America.
Patient Education & Instructions
Parents' Guide to Inflammatory Bowel Disease (CCFA)
Provides information about diagnosis and treatment, helpful tips for lifestyle changes, and resources for emotional support;
Crohn's and Colitis Foundation of America.
Resources for Patients & Families
Information on the Web
A Guide for Teachers to Inflammatory Bowel Disease (CCFA)
Information for school personnel about the diagnosis, sports participation, and planning for potential school absences; Crohn's
and Colitis Foundation of America.
Ulcerative Colitis (MedlinePlus)
Diagnosis and management information; sponsored by the U.S. National Library of Medicine.
Crohn's Disease (MedlinePlus)
Diagnosis and management information; sponsored by the U.S. National Library of Medicine.
Inflammatory Bowel Disease (KidsHealth.com)
Family-focused information about IBD; from the Nemours Foundation.
Caring for your Child with IBD (Johns Hopkins Health Book)
A 304-page resource for the family living with IBD; by the North American Society for Pediatric Gastroenterology, Hepatology,
and Nutrition.
Just Like Me! Teens with IBD (CCFA)
Information for teens with IBD including an ask-the-expert section, a chat room, and "Hot Topics" related to dating, family,
friends, and school; Crohn's & Colitis Foundation of America.
National & Local Support
Crohn's & Colitis Foundation of America (CCFA)
Credible disease information with an extensive “kids and teens” section, information about summer camps, and lists of support
groups at the local level.
Studies/Registries
Inflammatory Bowel Disease (clincialtrials.gov)
A listing of registries and clinical trials for children with inflammatory bowel disease; National Institutes of Health.
Services for Patients & Families in Rhode Island (RI)
Service Categories | # of providers* in: | RI | NW | Other states (5) (show) | | ID | MT | NM | NV | UT |
---|---|---|---|---|---|---|---|---|---|---|
Developmental - Behavioral Pediatrics | 11 | 1 | 2 | 8 | 2 | 3 | 8 | |||
General Pediatric Surgery | 5 | 1 | 2 | 12 | 5 | 2 | ||||
Nutrition Assessment Services | 3 | 1 | 1 | 84 | 14 | 8 | ||||
Pediatric Gastroenterology | 19 | 1 | 3 | 16 | 8 | 6 | 4 |
For services not listed above, browse our Services categories or search our database.
* number of provider listings may vary by how states categorize services, whether providers are listed by organization or individual, how services are organized in the state, and other factors; Nationwide (NW) providers are generally limited to web-based services, provider locator services, and organizations that serve children from across the nation.
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Use of enteral nutrition for the control of intestinal inflammation in pediatric Crohn disease.
J Pediatr Gastroenterol Nutr.
2012;54(2):298-305.
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Primary sclerosing cholangitis, autoimmune hepatitis, and overlap in Utah children: epidemiology and natural history.
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Update of the management of inflammatory bowel disease.
Arch Dis Child.
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PubMed abstract / Full Text
Hommel KA, Greenley RN, Maddux MH, Gray WN, Mackner LM.
Self-management in pediatric inflammatory bowel disease: A clinical report of the North American Society for Pediatric Gastroenterology,
Hepatology, and Nutrition.
J Pediatr Gastroenterol Nutr.
2013;57(2):250-7.
PubMed abstract / Full Text
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Transitioning the adolescent inflammatory bowel disease patient: guidelines for the adult and pediatric gastroenterologist.
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PubMed abstract / Full Text
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Varicella vaccination in children with inflammatory bowel disease receiving immunosuppressive therapy.
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Consensus guidelines of ECCO/ESPGHAN on the medical management of pediatric Crohn's disease.
J Crohns Colitis.
2014;8(10):1179-207.
PubMed abstract / Full Text
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2012;55(3):340-61.
PubMed abstract
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