Dr. Ghassan Wahbeh, right, diagnosed Paige Norris, now 14, with Crohn’s disease three years ago.
Paige Norris’s young life seemed to be sailing along with fair winds and sunny skies. At 10 years old she was an enthusiastic tennis player with lots of friends and a stellar academic life – two years ahead in every subject.
But sometime in fourth grade her internal weather shifted, and she developed debilitating abdominal pain.
Her parents felt helpless as doctors downplayed Paige’s symptoms. “It was so frustrating to hear condescending advice like, ‘kids have stomach issues; she’ll get over it,’” recalls Deborah Norris. “But I know my daughter, and she’s not a complainer.”
Paige’s condition worsened as mysterious bouts of vomiting and diarrhea sapped her energy. She stopped growing, lost 20 pounds, and had to quit her favorite sport.
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Dr. David Suskind
Late last year, David Suskind, MD, shared the good news with The Seattle Times that he saw positive results in the first FDA-approved studies of fecal transplants in children with inflammatory bowel disease (IBD) and, more specifically, in those with Crohn’s disease.
Our blog post on the research, published last June, has generated interest from families as far away as Japan.
Fecal transplants — a hot topic? Actually, it is. The research has been widely covered by the media and is even more important to the patients with IBD and families who clamor for new treatments and information that can make daily living easier and more “normal.” On the Pulse sat down with Suskind to follow up on his research, and to find out what’s next.
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The Crohn’s & Colitis Foundation of America recently featured this question from a parent on its Facebook page: “My son was just diagnosed with Crohn’s at the end of last school year. We did a lot of resting over summer break and he was feeling almost normal again. School is now back in session and he is starting a flare up. I know he feels bad and I am letting him take his time in the morning but I want him to attempt to go to school. I don’t want to push him too hard but I think it is important that he try to start the day and then if it’s too much come home. How do you other families handle this?”
This post received nearly 200 comments and advice from parents, a nod to the fact that while going back to school is a time of excitement, it can also be very stressful if your child has a recent diagnosis of inflammatory bowel disease (IBD), which includes Crohn’s disease and ulcerative colitis. In children with IBD, the digestive tract becomes swollen and inflamed. The Centers for Disease Control and Prevention estimates that IBD affects about one million Americans, occurring most frequently in people ages 15 to 30.
To help with the transition back to school, I’d like to share eight tips for parents. These tips and more are also in a video produced by Seattle Children’s.
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This week medical experts from across the country will gather in Seattle to discuss “Cases That Keep Us Awake at Night,” the theme of the 2013 Pediatric Bioethics conference. It’s not uncommon for things to keep us awake at night—a disagreement with a friend or neighbor or anxiety over a big work assignment—but the issues that clinicians and bioethicists will tackle at this confab are quite different.
Most of us, for instance don’t often think about the following questions:
• Should an organ transplant be performed over a family’s objections?
• Should Child Protective Services intervene when a family fails to address the eating habits of a morbidly obese child?
• Should healthcare professionals withdraw medical interventions against the wishes of a family?
Doctors, nurses and others will also discuss the intersection of the personal and the professional, and how it affects their work. At last year’s conference, Douglas Opel, MD, MPH, of Seattle Children’s, spoke about being diagnosed with Crohn’s disease and how it altered his role as a physician. Excerpts from that talk, which was published in its entirety in The Hastings Center Report late last year, are included below.
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You can’t blame Patient #1 for not wanting to share his name; he’d rather not be known as the guy who swallowed poop in the name of science.
But he does want you to know he is willing to go to extremes to help find a cure for Crohn’s disease, an autoimmune disorder that causes severe abdominal symptoms and robs his body of nutrients.
It’s not as crazy as it sounds. Fecal microbiota transplantation (that’s right – fecal, as in feces, as in poop) is a tried-and-true treatment for recurrent bouts of Clostridium difficile infection (or C. diff), a dangerous intestinal bacteria.
It works by repopulating the intestinal tract with “good” bacteria, which are often wiped out by the antibiotics used as the first line of defense against C. diff. Read full post »