Pediatric Inflammatory Bowel Disease: Care and Research

Pediatric Inflammatory Bowel Disease: Care and Research

>>I was in 7th grade. I had just started
my lacrosse season for that year and my parents noticed that I was not eating as much and
I was a little lighter, so they weighed me and I had lost 12 pounds in about four months.>>It came on real fast, from kind of normal
teenage woahs to something’s really wrong.>>Stomach issues like cramping, diarrhea,
bloody stools, and he was starting to go to the bathroom like 20, 30 times a day.>>And sometimes you need to rush to the bathroom. When you’re 14, 13, it’s really embarrassing.>>Well, I remember the first time noticing
he had blood in his stools, and by the time he was 1, he just was really, really sick. He was becoming very anemic and he
just didn’t have the energy to do anything.>>I didn’t know what it was,
how you got it.>>Because we just at that point
I think felt helpless.>>Pain in my stomach was so bad and I was
… I just kind of was thinking that was how I had to spend the rest of my life.>>So we reached out to his pediatrician. I think the doctor there was like, he’s so young;
I want him to go to the best of the best.>>The Center for Pediatric Inflammatory Bowel
Disease at the Children’s Hospital of Philadelphia is the largest center for children with inflammatory
bowel disease in the country and we believe, in the world.>>Inflammatory bowel disease is made up of
two diseases people refer to as Crohn’s disease, where there’s inflammation throughout the
GI tract from the mouth down to the anus, or ulcerative colitis, where you have inflammation
in the colon or in the large intestine. So, unfortunately, with inflammatory bowel
disease, there is no cure. When kids come to us, often their lives are
quite difficult and these kids have no appetite, they have no energy, they have abdominal pain,
they could have diarrhea. And so it really is important to
try to fix all those problems.>>From the very beginning, the first point
of contact that the family has with the CHOP team, they know that we’re taking
them seriously and we’re focused.>>To diagnose inflammatory bowel disease
can sometimes be rather challenging. It’s really pieces of a puzzle and you have
to put this puzzle together.>>It makes us the happiest when we’re able
to say to someone, we know what this is and we know what to do with it.>>We saw Dr. Kelsen, we didn’t really know
what to expect and we were worried and scared, and then she came in and she just looked at
us and she was like, Landen’s going to be OK.>>We really look at this as a team approach. You’re not coming just to see an IBD doctor;
you’re coming to see the team.>>We are incredibly lucky to be here at CHOP
where we have GI, or gastroenterology, but we also have the leading expert in immunology.>>We work with some of the finest
pediatric surgeons in the world. Some of the best pediatric
pathologists in the world. Our nurses are really top notch, world class,
and we all work together as a unified team.>>We sit in meetings every week and we discuss
tough cases and they value my opinion as a nurse as much as the director of the IBD center. Having the team together to think about the
child together will allow us to make a much better therapeutic plan.>>If you know exactly what’s going on and
what to expect, it keeps your stress level down a little bit.>>They immediately made us feel at home. They explained everything so well. I always loved that they talked to Lucy as
much as they talked to me.>>I know it’s a hospital, but it doesn’t
really feel like a hospital; it’s very like colorful and very positive.>>Everybody gets to know the name; everybody
gets to know their story and just makes you as a family feel like you’re in a safe place.>>It’s a little challenging to pick the right
therapy for the right patient and that’s why it is important to go to a center that has
the experiences of all the different therapies. And then patients immediately realize that
we have resources here that just are not available elsewhere. If a patient comes to us and they’re very
young, 3 years old, they’ll be seen by people who specialize in very early onset IBD.>>It’s critical to have a specifically directed
program for very early onset IBD because their disease is often quite complex.>>The hallmark of testing for inflammatory
bowel disease would be endoscopy. That would include an upper
endoscopy and a colonoscopy. Those are performed here
in our Endoscopy Center. We have qualified pediatric anesthesiologists,
pediatric nurses and, of course, our Endoscopy Suite staff who try to make that as
comfortable as possible for the child. There are some nutritional therapies.>>Nutrition is a critical part of
management of IBD here at CHOP. With good nutrition, we see
better disease outcomes. I can’t tell you the amount of joy that I
feel when our families come in and they see me and they say, you know, we tried
new foods; we’re gaining weight.>>Our hope is to treat this medically or
nutritionally, but there are instances where surgery might be the best option.>>I don’t think we were frightened of surgery
because they explained it so well and they were so calm and kind about it that we knew
it was going to be better than how she had been feeling.>>The overall goal is to find a cure.>>Right now, we have over 40 trials for research
dedicated solely to inflammatory bowel disease.>>I think the future is giving somebody gene
therapy where we say, you have one small letter off in your gene, we’re gonna fix that one
letter and you’ll be good.>>And even some of the studies recently have
saved these children’s lives. My own story’s maybe a little bit different. I uses to be a systems analyst, and then I
was diagnosed with Crohn’s disease. And once I was diagnosed I thought,
who’s better than me doing some of this research. And so I stopped being a systems
analyst and I went to medical school. When I see these kids, I think about where
I was and I know how they feel and they need to get better.>>It’s been about at least five years since
he’s been in crisis and had an ER visit.>>I don’t have to go to the bathroom as much. It’s just amazing.>>I’ve been in remission for about four years
now since my surgery. I feel fantastic.>>If we didn’t come here for a second opinion,
there would be no gymnastics, there would be no public school.>>Dr. Kelsen was like, we’re never gonna
tell Landen or you that he can’t do anything because of having Crohn’s.>>It’s nothing that we need to
shelter him and things like that.>>We kind of want to let him figure out what
he likes and what he wants to do and we’re just there to support him.>>Quality of life is feeling normal.>>IBD is not something that’s going to stop
them from living their life. They can absolutely do everything that they
have always done and maybe even better.>>Sky is the limit.>>When I’m doing gymnastics, I think about
nothing but gymnastics. I wanna be in the Olympics; it’s like really
up there, but I’d love to be in the Olympics.>>I’m hoping to be committed to a college
for lacrosse within the next two months. I want to be a pediatric nurse because I really
wanna help kids and I saw the impact that the nurses there had on me and
all the otherkids on my floor.>>I love coming to work every day. I love working with the team. I love taking care of these little kids.>>And I tell people, I know these
kids, they’re like my friends. I’ve known them from when
they were little kids. I think about the days when we met and they
were really sick and now I see them going off to college.>>The future’s incredibly exciting. Our team is ready and I think we’re super
excited to go on to the next question and the next challenge.

3 thoughts on “Pediatric Inflammatory Bowel Disease: Care and Research

  1. This is a wonderfully done video – just PERFECT!!!! The doctors and nurses of CHOP's IBD Center are truly the BEST of the BEST! As the parent of a child with IBD, my family could not have made it through the past 7.5 years without this amazing group! Top notch!

  2. This is my first year of having Crohn’s disease and seeing this video is really nice. My doctor there is amazing and tomorrow I get my first remicade treatment 😃😃😃

  3. Hello . I am a mother of an 8 year old autistic girl. since 3 years we eat, without gluten and milk. great digestive and behavioral change in improvement. letters from doctors who say it. we treated dysbiosis, and candida albican. Congratulations for your research.

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