Life Uncommon is a video series about children and adolescents with inflammatory bowel disease (IBD) and the professionals who care for them at The Children's Hospital of Philadelphia.
A Child's Wish for the Future: Beyond IBD
Stephanie: I really want to be a singer.
Child 1: I want to be a professional golfer and stuff.
Child 2: Go to culinary school, become a chef, and open my own restaurant.
Robert N. Baldassano, MD: This disease is presenting itself at almost an astronomical rate.
Child 3: I play piano and flute, and I'm really interested in that. I was thinking about maybe going to Juilliard.
Aimee E. Christian, PhD: Okay. You know, you have been diagnosed with this disease. This is what we're going to do, and in six months you will be fine. It's not like that.
Child 4: Maybe I would want to do like animal experiments in space.
Child 5: I want to go to med school.
Steven M. Altschuler, MD: We have seen a dramatic rise in the number of patients who require care for that condition.
Child 6: When I grow up I want to go to a college and be a surgeon.
Child 7: I actually ... I want to be a gastroenterologist.
Robert N. Baldassano, MD: It's become the most common chronic disease that we've seen in gastroenterology, and is becoming one of the most common diseases we have seen all of pediatrics.
Child 8: Just to get through school, get a job, and live a normal, happy life.
Music: Don't worry mother it'll be alright
And don't worry sister say your prayers
and sleep tight.
And it'll be fine, lover of mine
It'll be just fine.
Children Living with IBD
Robert N. Baldassano, MD: Inflammatory bowel disease is a disease that causes inflammation throughout the intestinal tract. Because of this inflammation, children are unable to eat. They have severe abdominal pain, they have diarrhea. They don't grow.
Aimee E. Christian, PhD: I think it presents hardships that little kids should never have to deal with.
Child 1: I was in the hospital once, and they had to put this tube down my nose, and I didn't like it because I could see yellow stuff going into me.
Child 2: You are getting colonoscopies, sigmoidoscopies. It's awful.
Child 3: You are constantly worried, you know, where is the bathroom, is there a bathroom?
Child 2: You are getting cramps, and you feel just awful. You feel like you'd rather die than go through all that pain.
Child 4: I didn't get to, like, be social and be a kid. I felt like I didn't get to be a kid for two years of my life.
Aimee E. Christian, PhD: Part of growing up is trying to be normal. And a lot of these children don't always feel normal.
Child 5: I felt like I was, like, two grades behind and stuff.
Stephanie: Some other people in my class doesn't have it, and I just want to be normal like them.
Child 6: And then being on the medications, and having your appearance change as a girl and I think, I mean, as a guy, too, was really hard.
Child 7: The really rude kids, they say I looked like Gary Coleman, or something like that.
Aimee E. Christian, PhD: It would be even difficult to watch TV. Every other commercial is about food.
Child 8: Sometimes it's hard not eating, but, like, you still get fed, as they say, but you are still a little hungry when the commercials come on and stuff.
A Team of IBD Experts To Treats Your Child's Disease
Narrator: For children with Crohn's Disease and colitis, there is hope. The Children's Hospital of Philadelphia is leading the country, the world, and the search for treatments and a cure.
Doctor 1: She actually went for an acute bleed and had a section done.
Doctor 2: She was diagnosed with Crohn's Disease.
Robert N. Baldassano, MD: Continuous drainage?
Maria R. Mascarenhas, MD: When you are part of the IBD Center, you just don't get one physician's knowledge and expertise. You get the collective knowledge and expertise of the center.
Steven M. Altschuler, MD: To really provide state of the art care and to be able to care for patients that really can't be cared for at other places.
Maria R. Mascarenhas, MD: By having a psychologist, by having a dedicated nutritionist. By having a social worker. By having a research coordinator. You need every single member of the team, and that's what we hope to achieve with the IBD Center.
Steroidal Treatment of IBD and Side Effects on Children
Narrator: But current treatments are far from perfect.
Robert N. Baldassano, MD: To this point, the therapy for Inflammatory Bowel Disease has been mostly Prednisone or steroid therapy. That's actually been the therapy that's been used in many different autoimmune-type diseases like Rheumatoid Arthritis, Lupus, Multiple Sclerosis when it really is telling us that we don't understand the diseases that well if every disease gets treated with the same medicine.
Aimee E. Christian, PhD: As great as steroids can be in terms of keeping a kid in remission, it's certainly not something that you would want to stay on for a long period of time. There are so many side effects.
Robert N. Baldassano, MD: We unfortunately have a good number of children who have had vertebral collapse, where the spinal column has collapsed, and they end up being wheelchair bound. Also, other problems, it could cause high blood pressure. For the teenagers, it could cause acne. It could cause excessive weight gain. And it also changes personality.
Breakthrough Research and New Treatments for IBD at CHOP
Narrator: The race is on to bring new therapies from bench to bedside. At the heart of everything is research.
Steven M. Altschuler, MD: I would say over the last 3 to 5 years, there has been an explosion of new therapies and diagnostic tools available for the care of patients with Inflammatory Bowel Disease.
Robert N. Baldassano, MD: At this time here at Children's, we are the principal investigator for the majority of all pediatric trials that are going on in Inflammatory Bowel Disease in the world.
Aimee E. Christian, PhD: We have one industry sponsor trial looking at an experimental new drug.
Child: The bottom of my feet were hurting on Saturday.
Robert N. Baldassano, MD: OK. OK. We will need to make that better.
Aimee E. Christian, PhD: We have one patient enrolled in that study right now, and she's actually doing amazing. She had been on high doses of steroids for 8 years, and now she's been weaned to less than 10 milligrams a day.
Child: It's a PIC line, which is a Central Line that is inserted through here, goes up my arm, close to my heart, in a major artery to my heart.
Support for Families of Children with IBD
Narrator: New drug therapies are promising, but equally important is the Center's focus in treating the whole child.
Robert N. Baldassano, MD: It's very important that we look at the psychological side of things. We need to teach the children how to cope with the problems that they have. Even maybe more important than that, we need to teach the parents how to cope with the disease.
Parent 1: When Stephanie was diagnosed, it really tore me up. Mainly because I knew all the pain that I went through, and I didn't want to see my daughter go through all of that.
Stephanie: Some people you can't talk to about, but I know that my dad had someone he knew I could talk to about it.
Parent 1: I know it hurts her a lot. But then she uses me as a source of information that I help her along with it.
Stephanie: I just smile and try to hide it in, but I think he knows that I'm trying to hide it in, and I think that it upsets him more.
Parent 1: I feel like I'm selfish because I want her, but I want her perfect.
Hope for the Future
Maria R. Mascarenhas, MD: Parents looking at this totally uncharted future, they often say, "Well how soon is my kid going to get better?"
Robert N. Baldassano, MD: We are advancing the field of knowledge about this disease and when these parents go to bed at night, they could have hope and they can feel that someday there will be a cure.
Music: I've heard you anguish I've heard your hearts cry out. We are tired, we are weary, but we aren't worn out. Set down your chains, until only faith remains. Set down your chains
Steven M. Altschuler, MD: There is really a sense at this institution that nothing is impossible.
Robert N. Baldassano, MD: The thing that is really so exciting is now for the first time in medicine we really understand the immune system. And with that new understanding of the immune system there are therapies being that are being developed that target particular abnormalities in the immune system. So that we can give a therapy that would work for an individual.
Child 3: I want to live while I'm well. I don't want to be like always worried if I'm going to get sick again, am I going to get sick again, am I going to get sick again.
Child 6: When they raise money it's easier to find a cure.
Steven M. Altschuler, MD: That will allow the center to really reach a level of national prominence.
Parent 1: My hope would be that there's just a cure for the disease and that she's able to live a normal life.
Steven M. Altschuler, MD: When you deal with children, especially when you deal with a child who’s ill, I think it does something to you that makes you work with a different mindset and kind of at a different pace.
Robert N. Baldassano, MD: I would really like the cure to be yesterday. And I feel like I'm in a race to try to get the cure as quickly as I can. There's children that are suffering now. There's children that haven't even been diagnosed with the disease yet that will shortly. So every day matters.
Child 5: I really love life and that's what this disease has given me is that every day when I wake up I'm so happy that I'm starting the day healthy.
Robert N. Baldassano, MD: Pediatrics I think you could have the greatest rewards but also maybe sometimes you have the greatest disappointments. And I guess people have to decide do they want that type of life. And I do believe the people here at Children's Hospital of Philadelphia who care for probably the sickest children in our society that everybody has taken on that mission. And that's what makes this hospital different than other hospitals and why it makes this hospital really a privilege to work at.
Related Centers and Programs: Center for Pediatric Inflammatory Bowel Disease, Division of Gastroenterology, Hepatology and Nutrition
Last Reviewed on Jul 18, 2014