Esmee (left) and Willa (right) pose for a photo.
A clinical trial was the only hope for Esmee, a little girl adopted from China. Read below about her story and the innovative research being done at Seattle Children’s Hospital and Research Institute to help those who would otherwise have no treatment option for chronic hepatitis B (HBV).
Renee Jones always wanted a little girl, so when the adoption agency called one day to tell Jones about Esmee and Willa, she was thrilled – two little girls instead of one!
She filed the paperwork for adoption and waited patiently to hear back. Read full post »
Elizabeth doesn’t let Crohn’s slow her down, enjoys hiking.
Elizabeth McIntosh, 19, has been through a lot to get to where she is today. Diagnosed with Crohn’s disease, one of the most common types of inflammatory bowel disease (IBD), at age 2, she felt like she was never going to be able to have a normal life – one uninterrupted by Crohn’s flare ups and debilitating abdominal pain.
But after undergoing surgery to remove more than three feet of her colon, she’s finally living the life she’s always hoped to live and wants to offer support to others living with Crohn’s.
“Never lose hope,” said McIntosh, who’s been a patient at Seattle Children’s since diagnosis. “You may have a long journey ahead of you, but you always have to have hope. It will get better.” Read full post »
Elizabeth McIntosh, 19
A unique fashion show took place at Seattle Children’s Hospital this weekend during the Inflammatory Bowel Disease (IBD) Conference, presented by the Northwest Chapter of the Crohn’s and Colitis Foundation of America and Seattle Children’s. To help end stigmas around ostomies, eight children and teenagers with inflammatory bowel disease, ages 8 to 20, walked the runway styled head-to-toe in the latest spring fashions by Nordstrom. Four of the children in the fashion show had ostomies, two did not have ostomies, and two of the models have IBD, but do not have an ostomy.
The only question was: did the audience know which models had ostomies and which didn’t?
The answer was a resounding “No.” Read full post »
Gluten has been in the news a lot lately and often gets a bad rap. Some see a gluten-free diet as a cure all for a vast array of stomach problems, including pain, bloating, diarrhea, constipation, and even weight gain and behavior problems.
But gluten – a nutritious mixture of proteins found in wheat and other grains – isn’t necessarily the culprit, says Nancy Nelson, a nurse practitioner at Seattle Children’s in the Gastroenterology and Hepatology program who specializes in stomach problems and inflammatory bowel disease. Cutting it out of your diet may not magically make you feel better.
That doesn’t mean that gluten sensitivity isn’t real – just that it gets the blame more often than it should. And while the cause of stomach problems varies, the symptoms are often very similar making it difficult to figure out how to feel better. Read full post »
Sometimes, everyday moments can have the most profound impact on an individual’s life. For Dr. Jeffrey Avansino, a surgeon at Seattle Children’s Hospital, that moment came many years ago as a new attending physician. An appointment with an 8-year-old girl changed his path as a doctor and inspired him to become a national leader in reconstructive pelvic medicine.
“There needed to be a better way”
“I walked into the exam room not really knowing what to expect,” said Avansino. “The little girl I was seeing that day had fecal incontinence and had previously undergone surgery to repair an anorectal malformation.”
For most of the appointment she hid behind her mother, not wanting to talk. She was socially withdrawn, and her mother explained that she was having trouble concentrating at school. Avansino learned from their discussion that she had been going to school in diapers. She wasn’t able to control her bowels and would have accidents throughout the school day.
“I was shocked,” said Avansino. “I knew I needed to do something to help, but also I couldn’t manage patients like her on an individual level.” Read full post »
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.
Read full post »
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.
Read full post »
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.
Read full post »
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.
Read full post »
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 »