Eleanor Lee was just age 2 when she developed a severe bout of diarrhea. Kelly Lee, the child’s mother, said her pediatrician reassured her that everything was fine, but the diarrhea got worse. Another pediatrician recommended lab tests, which showed low levels of albumin in Eleanor’s blood, a potential sign of intestinal inflammation. About that time Eleanor’s breathing became very shallow and she was admitted to a hospital in the Washington, D.C., area.
Suspecting a problem with absorption – the uptake of substances by the gastrointestinal tract – doctors ordered an endoscopy and a series of stool cultures that showed no such problem. Also, a full-body CT showed no evidence of a tumor. What was going on?
Interestingly, the beginning of the answer came from Lee’s brother-in-law, a medical student who had just gone through a rotation in gastroenterology. To him, the child’s symptoms sounded like IBD. When Lee raised the issue with her daughter’s doctors, they flatly answered that 2-year-olds do not get IBD.
Lee took Eleanor to the Johns Hopkins Pediatric IBD Center, where pediatric gastroenterologist Kathy Schwarz gave her a different response: “Yes, of course, a 2-year-old can have IBD. There’re lots of possibilities. We’re not going to rule anything out.”
Indeed, additional testing revealed that Eleanor had ulcerative colitis. Immediately her care was placed in the hands of pediatric gastroenterologist Maria Oliva-Hemker, and the nurses and nutritionists who follow the IBD Center’s comprehensive approach.
“Right away our experience was different – everyone was so much more in control and concerned about Eleanor’s well-being and the whole child,” says Lee.
Nurse practitioner Lindsay Wilson educated Lee about the disease and scheduled her child’s infusions of Remicade. Because this biologic suppresses the immune system, patients have to be watched closely for any signs of illness.
Eleanor, now 6, has responded well to her infusions – so well that she’s off all oral medications. “Eleanor has grown an enormous amount, and it’s a miracle for her to have a totally normal life and not take 10 pills every day,” says her mother. “But there are risks to it.”
But those risks, Lee adds, have been countered by the confidence she has in the IBD Center and Oliva-Hemker: “She once said to me, ‘You can tell your daughter I will always be here for her, and whenever she doesn’t feel well, I can make her feel better. That’s my job.’”
To learn more about the Pediatric IBD Center at Johns Hopkins, call 410-955-8769.