From Johns Hopkins University. We know a population that suffers from severe GI problems still mislabeled "autistic behavior." And we know a few brave doctors trying to help.
March 28, 2011
-Delays in Diagnosis Common
Once a medical rarity in children, inflammatory bowel disease today is increasingly common in kids, but many of them may not be diagnosed in a timely manner, according to experts from the Pediatric Inflammatory Bowel Disease Center at Johns Hopkins Children’s.
Gastroenterologists there say that many of the hundreds of children they see were referred to them only after months of repeated visits to their primary-care physicians for symptoms mistakenly attributed to common GI ailments like viral gastritis.
“Inflammatory bowel disease is still considered an adult condition and is rarely on pediatricians’ radars,” says Maria Oliva-Hemker, M.D., chief of the Gastroenterology & Nutrition division at Hopkins Children’s and director of the comprehensive IBD center there. “Fifty years ago, IBD was almost exclusively diagnosed in adults. These days, treating children with IBD is business as usual in our clinics.”
The two main forms of IBD are Crohn’s disease (CD) and ulcerative colitis (UC). For unknown reasons, Crohn’s disease seems to be rising more rapidly in children than ulcerative colitis, Oliva-Hemker says. Children with CD also tend to be diagnosed later than those with ulcerative colitis because the most common symptom is vague abdominal pain rather than the more suggestive bloody stools seen in ulcerative colitis, she notes.
Delays in treatment can make IBD worse and lead to severe anemia from gastrointestinal bleeding, poor food absorption, malnutrition and stunted growth. In advanced cases, IBD can cause serious damage to the colon and small intestine that requires surgery.
To prevent dangerous delays in diagnosis and treatment, Oliva-Hemker says the following symptoms — especially if they keep coming back or never fully go away — should prompt a visit to a specialist:
• abdominal pain
• bloody stools
• nausea and/or vomiting
• poor appetite and weight loss
• poor growth, especially in younger children
• pale skin, rapid heartbeat, fatigue and dizziness, all of which could indicate chronic anemia from GI bleeding
• a family history of IBD — up to 30 percent of childhood cases have genetic roots
Oliva-Hemker advises pediatricians who suspect IBD to obtain routine blood tests to check for anemia and inflammation markers like elevated sedimentation rate and C-reactive protein. The diagnosis can usually be confirmed with an endoscopy and colonoscopy.
IBD is most commonly diagnosed in school-age children and teens, but Hopkins Children’s gastroenterologists say that they have seen the disease in a growing number of children younger than 5 years of age.
More than 100,000 children in the United States have IBD, according to the Crohn’s & Colitis Foundation of America. A 2003 study published in The Journal of Pediatrics reported a surprisingly high rate of IBD among children in Wisconsin — the highest in the world at that point — 7.5 cases per 100 000, with a CD rate of 4.56 and a UC rate of 2.14.
Scientists believe that IBD is triggered by an overactive immune system that mistakenly attacks the colon and small intestine. The reasons driving the rise of childhood IBD remain unclear, but genetic and environmental factors are clearly at play, experts say. Because genetic makeup does not change drastically in populations over short periods of time, it is more likely that changing environmental factors are triggering new cases in genetically predisposed children, the researchers say.
For more information on the IBD and the IBD Center at Hopkins Children’s: www.hopkinschildrens.org/pediatric-inflammatory-bowel-disease-center.aspx
For information on coping with IBD:
Founded in 1912 as the children's hospital of the Johns Hopkins Medical Institutions, the Johns Hopkins Children's Center offers one of the most comprehensive pediatric medical programs in the country, with more than 92,000 patient visits and nearly 9,000 admissions each year. Hopkins Children’s is consistently ranked among the top children's hospitals in the nation. Hopkins Children’s is Maryland's largest children’s hospital and the only state-designated Trauma Service and Burn Unit for pediatric patients. It has recognized Centers of Excellence in dozens of pediatric subspecialties, including allergy, cardiology, cystic fibrosis, gastroenterology, nephrology, neurology, neurosurgery, oncology, pulmonary, and transplant. Hopkins Children's will celebrate its 100th anniversary and move to a new home in 2012. For more information, please visit www.hopkinschildrens.org