IBD in Children

Podcast Transcript

Dr. Scott Steele: Butts and Guts, a Cleveland Clinic podcast exploring your digestive and surgical health from end to end.

Dr. Scott Steele: Hi again, everyone, and welcome to another episode of Butts and Guts. I'm your host, Scott Steele, the Chair of Colorectal Surgery here at the Cleveland Clinic in beautiful Cleveland, Ohio. And today we are very pleased to have a first-time guest. That's Dr. Sandra Kim who is our Chair of Pediatric Gastroenterology, Hepatology and Nutrition at Cleveland Clinic Children's. Dr. Kim, thanks so much for joining us on Butts and Guts.

Dr. Sandra Kim: Thank you so much for having me. I'm excited to be here.

Dr. Scott Steele: Today we're going to talk a little bit about inflammatory bowel disease or IBD in children. But before we get there, why don't you tell us a little bit about yourself, where you are from, where'd you train, how to come to the point that you're our chair here at Cleveland Clinic Children's for Pediatric Gastroenterology, Hepatology and Nutrition?

Dr. Sandra Kim: Thank you so much for asking. By the way, I think it's kind of a mouthful when I think of what my roles are. I am a mid-westerner through and through. I was born in Pittsburgh but really grew up, during childhood, my high school years in Columbus, Ohio, so right down the street, but went to the University of Michigan for both undergrad and medical school through the Inteflex program, so I clearly knew where my Big 10 loyalties were, and they still stand on football Saturdays.

I trained at the Baylor College of Medicine in Houston, Texas for my general peds, as well as my pediatric GI clinical fellowships but then decided to make a little bit of a switch in my career from being a primary clinical pediatric gastroenterologist to one who really focused on IBD care and research.

I did a two and a half year research post-doctoral fellowship at the University of North Carolina at their center of GI Biology and Disease under the mentorship of Dr. Balfour Sartor and ended up staying there for the first decade of my faculty career, really working as an NIH funded basic and translational researcher looking at animal models of colitis. But I think at that point, after that first phase, I really decided that I was going to continue focusing on IBD care but decided to move more into the areas of quality improvement and add advocacy for pediatric patients living with IBD. And so, that led me to the next phases in my career, first at Nationwide Children's, and then subsequently at the University of Pittsburgh at their children's hospital where I directed their IBD program and served as the associate program director for the fellowship.

But a couple things that were instrumental in Pittsburgh. One, there is this incredible gentleman who I still consider to be a friend and mentor by the name of Dr. Miguel Regueiro, who convinced me to go to Pittsburgh to look at the concepts of the medical home for patients living with IBD. And then as I helped develop those programs and other programs focusing on kids, the opportunity came about to join the Cleveland Clinic Children's Hospital and to also partner with our colleagues at the DDSI. And so, now I'm here.

Dr. Scott Steele: Well, we're so glad to have you and again, congratulations on all your successes. Today we're going to talk a little bit about IBD in children. And so, we've had some podcasts on in this past, but for those who haven't heard it, can you tell us a little bit more about inflammatory bowel disease to our listeners?

Dr. Sandra Kim: Inflammatory bowel diseases, or IBD, can sometimes be confused with irritable bowel syndrome or IBS. And they are two different entities. Inflammatory bowel diseases are chronic inflammatory diseases that can affect any part of the GI tract and also other parts of the body that are outside of the GI tract. Again, they're chronic, they're relapsing, and because of the chronicity, there are no specific cures. Although, with medical advances, we now have ways that we can hopefully effectively manage disease through the combination of medications, dietary interventions and surgery. And so, the two types of inflammatory bowel diseases most folks are familiar with are probably Crohn's disease and ulcerative colitis.

Dr. Scott Steele: We haven't talked much about IBD in terms of the pediatric population. Is there a certain age when a child might at first experience IBD?

Dr. Sandra Kim: It can be anywhere from infancy to older. I know that the traditional patient groups that we think of when we think of IBD are typically young adults or older. The reality is, at least, I would say around 25 percent, if you look at both our clinical experiences, but also the epidemiology, shows that 25 percent of all individuals in this country who have IBD are going to be diagnosed by the time they're 18 years. That's already the pediatric and adolescent population.
The other categories within that demographic are the patients who have what we call very early onset IBD, and those are the children who are six or younger who develop IBD. And then even within that subset of patients are the children who develop infantile, very early onset IBD, and those are the children that are two years or less. I will tell you, from my personal experiences, my youngest patient was 10 and a half months old. I know that that's unusual, but that is a very real phenomenon.

Dr. Scott Steele: To delve in a little bit deeper, "truth or myth?" Most children who experience IBD are diagnosed during adolescence.

Dr. Sandra Kim: Yes. That is true that it's going to be your pre-adolescent, younger adolescents still.

Dr. Scott Steele: "Truth or myth?" IBD in children is passed down hereditary-wise.

Dr. Sandra Kim: That's a little bit more complex. It is not an inherited disorder. And I think that's one of those things that we really have to emphasize to our patients and their parents, especially those who have family members who have IBD. We do know that genetics has a place in the pathogenesis or development of IBD, but the reality is it's not a heritable disorder.

When we think of genetics, there are over 240 genes that are associated with IBD in some form, but we don't know if it's an absolute causative mutation for some of these genes or if it's associative. Again, genetics has a place, but there are other factors that come into play, whether it's environmental being a big piece as well. I think those are the things that we have to really think about when we discuss the development of an inflammatory bowel disease, especially in our children who we see in our clinics.

Dr. Scott Steele: Sandy, why do we not know what causes IBD? It just seems to be so common in both the pediatric as well as the adult world and yet we still can't figure out exactly what it is. Why do you think that's the case?

Dr. Sandra Kim: I think that is one of the most frustrating questions that we have as physicians and researchers who focus on IBDs. And so, I think one of the pieces, again, is it's heterogenetic, meaning it is not a uniform set of inflammatory diseases. There are so many different factors that come into play. Even thinking about the traditional categories of Crohn's disease versus ulcerative colitis. If you really think about it, we think about Crohn's versus ulcerative colitis on multiple levels in terms of location of where the disease is involved, the types of inflammation we see. But when you think about it, there is even a spectrum within the group of patients with Crohn's, the patients with ulcerative colitis, and I think that's really reflective again of the fact that there are so many genes that are associated with IBD, as well as the fact that there are different environmental factors depending on what interplay that you have that lead to the development.

It is not so straightforward. I have families every day that ask, "Why isn't there that cure?" And I tell them the reality is it's because of the variability both in genetics, the environmental factors and how it develops. And there's going to be a difference between an infant who develops IBD, versus a young adult, versus someone who's older. That's one piece.

The other area where there may very well be more of a clear-cut genetic cause identified are in children with very early onset IBD having what we call monogenic IBD. Fancy word for saying there's a specific gene that's identified that could be causing the inflammation. But again, I think understanding some of those relationships IS very important for helping us understand what might be causing IBD. But the reality is that it's still a very small subset of the patients that we care for.

Dr. Scott Steele: Let's go back to our pediatric population. What symptoms related to IBD might a child experience?

Dr. Sandra Kim: I always say that there's always that classic triad and that's not that different from what we see in adults who develop IBD. The classic triad may be abdominal pain, diarrhea, blood in the stools. But when you think about children, especially those who have Crohn's disease, there are going to be other things that we have to think of. And one of the big pieces I always say is when you have a child who has unexplained issues with growth or weight gain, and then may have other symptoms which may include some of the things like abdominal pain, increased fatigue, unexplained fevers, especially if there's a family history of IBD, you really have to start thinking about it. Again, they're classic symptoms, but especially in children, growth and nutritional status, I think, are actually also important markers of disease activity and symptoms that may cue us that a child may have IBD.

Dr. Scott Steele: If, unfortunately, this goes untreated, or undiagnosed if you will, can IBD affect how a child develops?

Dr. Sandra Kim: Oh, absolutely. There are multiple levels a child could be impacted on. The obvious, if you do have significant inflammation and the traditional symptoms, abdominal pain, diarrhea, blood in the stools, increasing malabsorption, you can have nutritional deficiencies, you can develop anemia, certainly the complications of inflammation itself not treated, whether it becomes obstructions or even tears or perforations that lead to things like abscesses. I know that those are more severe manifestations, but even stepping back and looking at things from a systemic standpoint, growth is a crucial part of what we look at. And especially in children who have Crohn's disease, if they have delays in getting diagnosed, are really at increased risk for both delay in pubertal development, as well as real growth delays.

And when you think about children and think about your own child if you are a parent listening, you know how the pediatrician always looks at the growth charts, and we know that there's a timeframe that's really crucial what I call that growth window during the early stages of adolescence. And if you lose that timeframe where you should be growing and developing, that's a critical piece that you may not be able to recapture later on.

Dr. Scott Steele: As you said, some of the early symptoms might be very non-specific. Belly pain, diarrhea, symptoms that children may experience all the time. When should a parent or legal guardian seek medical attention if they suspect it?

Dr. Sandra Kim: I think that if you are worried that your child, and I tell families, you know your child the best, persistent abdominal pain, poor growth fatigue, that you can't explain, even unexplained fevers, or even other what we call extraintestinal symptoms. Fancy words for saying symptoms that are outside of the GI tract that might give you a clue or hint that something's not right. Persistent mouth sores that just seem to come back over and over again, not heal well. Unusual bruises on the skin that you can't really explain, especially if there's some of these other symptoms going on. I think when you have some of those issues, it's really important to reach out to your pediatrician who is always going to be your biggest ally and say, "Listen, I think something is really off here. Should we be seeing a specialist?" And I think, parents, if you feel that there is something not quite right with your child, you should feel empowered to talk to your pediatrician to see if a referral to a pediatric GI specialist is warranted.

Dr. Scott Steele: It's tough to get our kids to go in to see a doctor. Tell us a little bit, how is this diagnosed? They bring him in to see you and walk me through that. What happens?

Dr. Sandra Kim: Absolutely. If there is a child or a teen that we have suspicion that may have IBD, the first piece is they come in to see me for a consultation. And at that point, I like to ask the child or teen and then the parents as well what's been going on in their lives. How have they been? Besides the obvious things everybody thinks of when you go and see a gastroenterologist, "Are you having stomach pain? If so, tell me about that. Let's talk about your bowel movements. Have they changed?" I also like to know about other things. "Tell me about fatigue. Are you feeling unusually tired that you can't really explain by the amount you're sleeping? Tell me about your appetite." And that is always, I think, interesting because usually it's not going to ever be abrupt.

But one of the things I think of, especially if a child or teen I suspect may have inflammation like Crohn's disease, especially involving the small intestines where you may not have necessarily the bloody stools, may have subtle symptoms of abdominal pain. "Do you feel like you're not eating as much?" What I call early satiety. One simple way, and I remember one of my colleagues who was a pediatric surgeon had said he likes asking the patients, especially when we worry about narrowed areas in the GI tract, "When you sit there and eat a meal, how much did you used to eat? And now, as you're losing weight and we can't explain it, how much are you able to eat of that meal?" I think it's those big pieces. Just summarizing, we always ask about the obvious stomach pain, bowel movements, and what I call the overarching things like fevers and fatigue, but also asking for the subtle things, again, eating, activities of daily living. Are you able to do those things? And so, I think really looking at that whole picture.

Dr. Scott Steele: Talk a little bit about treatment, understanding that we have this giant umbrella for IBD, and ulcerative colitis may be different than Crohn's, and different aspects of Crohn's may be different. But in addition, what's the prognosis for a child experiencing IBD?

Dr. Sandra Kim: I think first stepping back, so let's say we have gone through our discussions, we suspect that a child may have IBD, there are a couple things that we're going to do. If the labs have not already been done, we're going to do the baseline labs. Look at blood counts. Are you anemic? Look at blood and stool markers. Are they a concerning for inflammation? Looking at nutrients. Are you iron deficient? Do you have a B12 deficiency? Vitamin D? Looking at other labs like kidney function and liver testing, because sometimes you can have other organ systems involved if you have IBD, but also knowing that baseline, anticipating if a child may need to go on medications that may impact some of those numbers, that's the first piece.

Then the second phase will be to proceed with doing what we call endoscopy. I always say endoscopes, they're thin tubes, there's a camera, there's a light. And what they're able to do, they give us a lot of information. First of all, by having that camera, we're able to capture photos, in essence, of how things look within your GI tract. We are able to see if there's inflammation, how does it look and what areas are involved? And then the second piece I tell families, we're also able, with the scopes, to take tiny tweezers, in essence, what we call biopsy forceps, and take small scrapings of the lining, which may not seem like a lot, but allows us to work with physicians, known as pathologists, look under the microscope and see if there's normal tissue or inflamed tissue. And if so, is there what we call more chronic inflammation, longer standing inflammation, versus more acute and then seeing types of inflammation.

I think those pieces are all important because that allows us to take our clinical suspicion to then get actual, basically pictures, as well as tissue diagnoses, to say this is ulcerative colitis or this is Crohn's disease. And then the final piece, there may be different types of imaging that will do special types of MRI tests that help us look at the small intestine, the parts of the intestinal tract that can't be reached by scopes, to make sure that there's no narrowed areas that may need surgical intervention or other types of interventions that make us worry for the potential for blockages.

Let's say we've now determined a patient has IBD. So, then we say, "Is it Crohn's disease, is it ulcerative colitis, is it severe, and what types?" And so, what I like to do when I have a patient, after we've had those first stages and we've said, "Okay, this looks like inflammatory bowel disease." I'd like to set up extra time and really just sit down and talk to the families. And before I even get started, I just ask the families how they're doing. I mean, they've gone through a lot, and families will say, "In some ways, I'm glad we have an answer." But then when you talk about what it means to have a chronic inflammatory disease where they've read, whether it's online, talked to their friends, talked to their physicians and heard that these are diseases that don't have cures right now, can certainly have potential significant issues if the disease is not effectively treated. But at the same time, you're also reading that a lot of the medications we use can have their own side effects. I like to just sit down and level set with the families and just know how they're doing because I think you need to understand that piece.

And then what I like to do is say we're going to have in, essence, what I call a new patient teaching. This is a new language you have to learn when your child has a chronic disease. And so, going through what is IBD, so I can say, "This is a chronic relapsing disease that can affect any part of your GI tract and also has extraintestinal manifestations." That's a lot of medical terminology. We can start with that, but say, "Okay, do you know what that means?" And go through that.

We go through that, and then I actually have diagrams in a form that I worked with, my former nurse practitioner in Pittsburgh, Whitney Gray, who actually has a new teaching module. What I like to say is, "Okay, here are the diagrams, so is this Crohn's disease or ulcerative colitis?" We first discuss that and then we say what the severity is. Is it mild, moderate, or severe? Because as you know, as well, that's going to help us decide what therapeutic route we go. And then where is your disease located? Because I think that's also important in saying where your disease is located will impact the types of symptoms you might have. And then discussing whether we think other organ systems are involved with the type of IBD the child or teen may have.

For instance, do you have what we call oral manifestations, like oral ulcers? Do you have what we call perianal manifestation, where in the rectal area you may have things like fistulas or tags? Do you have involvement of your joints? Patients with IBD, there's a good percentage that can develop some of these manifestations outside of the GI tract, with your eyes, with your joints, with your skin, and to a lesser extent sometimes kidneys or liver.

And so, it's really important that we define all that. We need that for the families to understand, but we also need to know that as physicians because that's going to impact how we do treatments. And then we go through what the concepts of what we call induction and maintenance are. Fancy terms, but I always say that induction, that's where you have that “forest fire” that represents the ongoing initial exacerbation, and you have to figure out the treatment or treatments in the combination to get that immediate set of inflammation under control.

At the same time, we need to be thinking about the maintenance piece, because this is not like an infection that you use an antibiotic you treat, you're done with. You have got to get the inflammation under control, but then you have to have that maintenance plan so that you can hopefully decrease the frequency of these exacerbations in a chronic inflammatory disease. I always like to write out what's induction, what's maintenance, and then go through the different options and talk about the benefits, which I think is very important. But also say, "These are the risks." And it doesn't matter if we say that a lot of the risks and side effects are rare. If it happens to your child, you're not going to really care that I said it was only a couple percentage points. It's 100 percent when it's your child. So, really setting up those realistic expectations and why it's so important to have regular visits, lab screening, and all the different pieces that go into it.

And then the other piece I like to go into is the role of diet in managing, because I think that's a very important piece. Other things that I would like to introduce are who is actually going to be on the team. The pediatric GI physician is the most visible, but I think dietitians are important, psychology, having a chronic illness, how do you deal with having a chronic illness? Let's address that up front because we know that stress and anxiety can be very real pieces and we need to be able to address that and acknowledge that.

Discussing other members of the team besides psychology, I also, especially in my patients who have more severe disease, like to have them meet my pediatric surgery colleagues from the get-go. If there's any concerns that there may be a need for surgery at some point, I always say that having my patients meet with the surgeons earlier on is important. I always say that just because you meet a surgeon, doesn't mean that you necessarily need a surgery, but it's important to understand where the surgeon's partner with the pediatric gastroenterology team in terms of management of disease so that it's demystified. I think it's all those pieces.

And then when available, I think the power of parent mentoring and educational resources are really crucial, having all that. That seems like a lot. I always say that that first visit's usually going to be a fairly detailed visit, plus bringing in members of the team. But I always like to give families a little bit of time to then be able to get back to us and ask questions.

Dr. Scott Steele: Well, certainly there's a lot to it. And so, are there any advancements on the horizon in terms of diagnosing or treating IBD in children?

Dr. Sandra Kim: I think the diagnosis piece, we have a pretty good handle of what we need to do. I think with the diagnostic tools, with endoscopy, with imaging, that's not the part that I think has really changed as much. I think we use non-invasive GI tract specific markers, like stool inflammatory markers, like fecal calprotectin or lactoferrin, in conjunction with how we would mesh that with more invasive interventions like colonoscopies and upper endoscopies.

I think in terms of medications, the therapies that we have really mirror what we see in the adult patient population. In the old days, there were very few medications, there were steroids, there were what we call immunomodulators that helped do more general modulation or suppression of the immune system. And then we've had now the growing armamentarium or the types of medications we have, what we call biologic agents that target specific pathways of our inflammatory responses. And that really has been growing and that really has changed how we can treat our patients with IBD.

The good news is we have many more medications that we can use, but for pediatrics, we run into two major issues that our adult colleagues don't see. One is that the testing and looking at how medications work, it lags behind in the pediatric population. And then the other piece is because a lot of these medications that we know can be very effective in children and young adults are not formally approved by the FDA, it is often a little bit more challenging to get access even to the medications that we know could be effective.

That is the area that is a little bit unique to us in pediatric care, but we're certainly very proactively working in the pediatric realm. And I'll tell you, there's some major ways that pediatrics has been able to move advancements pretty quickly. I think one of the big pieces is really the power of multi-center collaboratives. I think in pediatrics, even more so than our adult colleagues - and again, I'm not slamming that at all. We've had to do this in pediatrics. We have several well-developed pediatric inflammatory bowel disease research and quality improvement networks. And by doing that, we're really able to leverage the power of multiple centers coming together to really focus on different aspects of how we diagnose, treat and improve how we treat patients with IBD. I always say that our research networks that look at patients in the natural history of disease that may not change the immediate interventions for kids who are diagnosed, but it allows us to do things like developing risk models so that in the future we are better able to almost personalize how we determine which medications work best for which kids with the types of IBD.

The other things that we've been really effective in are the pediatric IBD quality improvement networks coming together and seeing how we can improve how care is delivered in real time. I think those are just some of the ways that we are both looking at the future in terms of medications that continue to be developed and seeing how beneficial they are to children with IBD, but in the real time, really improving how care is delivered from a quality improvement standpoint.

Dr. Scott Steele: That's fantastic. And so, now it's time for our quick hitters, a chance to get to know you a little bit better. First of all, what's your favorite food?

Dr. Sandra Kim: Hummus.

Dr. Scott Steele: Very good. What's your favorite sport? Either to watch and or to play?

Dr. Sandra Kim: Big 10 football. ACC basketball, especially when Michigan is playing football and Carolina or Michigan are playing basketball.

Dr. Scott Steele: Go Badgers. Tell us about a time for your favorite trip or place that you want to go to one day.

Dr. Sandra Kim: My favorite place is Asheville, North Carolina. Not just because I spent a good part of my young adult career in the Carolinas. I think Asheville's just beautiful. But it's also one of the last places that I went on vacation with my grandmother, who remains my ultimate role model. So, it's got a sentimental place for me as well.

Dr. Scott Steele: Yeah, it would echo. It's a wonderful town. And finally, you've been all around. Tell us something you like about being here in Northeast Ohio.

Dr. Sandra Kim: I love the weather, which sounds crazy. You can tell that I haven't fully lived through a Cleveland winter. I love it. You get four seasons, but I love being by the lake. It's really cool. I've always been pretty much landlocked all my life. And so, I love the fact that I can sit on my balcony, and I can actually see Lake Erie.

Dr. Scott Steele: Give us a final take home message regarding IBD and children.

Dr. Sandra Kim: A couple take home messages. For parents, if your child is diagnosed with IBD, know that you are not alone. Know that there is a whole network in the community, within your medical centers, to really help you navigate all of the different aspects. Not just medical, but also psychosocial as well, and I think that's really important. And I think for healthcare providers, knowing the basic symptoms and other warning signs that make you suspect that a young adult or a child can have IBD, and remember that it's not an adult or young adult disease only, it really can strike anyone from infancy to geriatrics. If you have any questions or concerns, don't hesitate to reach out to centers like what we have here at the Cleveland Clinic. Partner with your pediatric GI colleagues so that we can get our patients diagnosed as quickly as possible so that we can start the right treatments.

Dr. Scott Steele: And that's fantastic. And so, to learn more about the Department of Gastroenterology, Hepatology and Nutrition here at Cleveland Clinic Children's, visit clevelandclinicchildrens.org/gi. Again, that's clevelandclinicchildrens.org/gi. You can also call us at (216) 444-5437. That's (216) 444-5437. Dr. Kim, thanks so much for joining us on Butts and Guts.

Dr. Sandra Kim: Thank you so much for having me.

Dr. Scott Steele: That wraps things up here at Cleveland Clinic. Until next time, thanks for listening to Butts and Guts.