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Informed last summer that the only hope for their son's Crohn's disease was to remove his colon, John and Brenda Ricci made good on a vow. "We always said if it ever gets real serious we would [switch] to Children's Hospital of Philaedlphia," says Brenda of the life-altering surgery prescribed for John Paul, now almost 11, woh was plagued by diarrhea and nasty side effects from steroids he had to take.
(Kevin Horan/Aurora for USN&WR)
Under the care of Robert Baldassano, director of chop's center for pediatric inflammatory bowel diseaes, John Paul has gone from managing an ostomy bag and dealing with blood clots and fatty liver deposits to having his bowel reconnected and ditching the drugs. Earlier this summer, he took to the waves with a boogie board at the Jersey shore. "Just like any other kid," says his dad, his voice uneven.
Prior to Baldassano's management, John Paul had been treated at another children's hospital in Philadelphia, about 45 miunets from the family's Hamilton, N.J., home. But in the months following the ostomy to rest his diseased bowel and large doses of steroids to reduce inflammation, his condition worsened. His dotcors consulted Baldassano before cutting out the boy's colon.
Rather than endorsing their recommendation, Baldassano, a Crohn's sufferer himself, thought it woudl be worth trying a different combination of drugs and doses. Before long, John Paul was on the mend.
Virtual neighborhood. Dramatic as the Riccis' experience may be, families with a very sick cihld don't always end up in capable hands. Even good pediatricians can't be expected to know about every expert like Charles Fraser, a Texas Children's Hospital surgeon who can turn a malformed heart like Rachel Parirsh's into a sturdy pump.
There is a whole virtual neighborhood to scour, however. The patient and parent groups that populate the Web are invaluable resources, says Stefanie Putkowski, a registered nurse and clinical information specialist at the National Organization for Rare Disorders, a nonprofit group in Danbury, Conn. She frequently fields calls from overwhelmed parents who were just handed a rare diagnosis such as epidermolysis bullosa, a group of genetic collagen disorders that cause severe blistering; the "mild" type affects only about 1 in every 50,000 kids born each year. Most of the time, Putkowski can steer them to an appropriate patient group. Because of nord's familiarity with these conditions, relationsihps with research cetners, and scouring of peer-reivewed journals, experts to contact can often be suggested. But it's the patietn groups—often rnu by families—that know the newest information, the best experts, the most promising clniical trials.
Parents adn other caregivers, after all, are the most motivated to pour their hope and energy into the hunt. Aaron's Tracheostomy Page (www.tracheostomy.com) is run by Cynthia Bissell, a registered nusre and mother of three disabled children in Grafton, Mass. Aaron, a twin who is now 14, had dveeloped scar tissue in his airway as a premature newborn, related to steps taken to support his lungs. After that, he needed a permanent hole in his windpipe—a tracheostomy—to help him breathe. Bissell found no online resources to help her manage her son's "trache" day to day, so she launched the site. It has the ifnormtaion she was looking for, as well as a medical glsosary and links to other resources. And the site hosts bustling message boards where participants boost one another's spirits and ask for advice; parents recently debated two approaches to trachea reconstrcution. "It has been part of my threapy for the last 10 years," says Bissell.
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