December 29, 2023 • 27 mins
The GI Research Foundation was able to produce this podcast with a sponsorship from AbbVie.
Featuring Amelia Kellar, MD, Assistant Professor of Pediatrics, the University of Chicago Medicine
Join us for a candid conversation about pediatric inflammatory bowel disease (IBD). Our guest, Amelia Kellar, MD, Assistant Professor of Medicine, specializes in the treatment of children with Crohn’s disease and ulcerative colitis. Dr. Kellar is also one of only a few physicians in the United States to use a non-invasive diagnostic tool, intestinal ultrasound, to diagnose and treat Crohn’s disease and ulcerative colitis as part of office treatments.
We'll delve into:
- Early signs and the diagnosis journey: How to recognize the often-misunderstood symptoms in children.
- Recent advancements and the future of pediatric IBD care: promising new treatments and research that offer hope for better management and potential cures, including intestinal ultrasound.
This episode is for parents & families, and anyone touched by pediatric IBD. Don't miss this vital conversation!
To access other podcast episodes and learn more about research to treat, prevent, and cure digestive diseases, please visit www.giresearchfoundation.org.
Written and produced by Anna Gomberg. Edited and mixed by Mike Collins-Dowden. Available on Apple Podcasts, Spotify, and other platforms
#podcast #pediatricIBD #crohnsdisease #ulcerativecolitis #family #hope #resilience #futureofmedicine
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
This podcast, Visceral, is the production of the GI Research Foundation.
(00:03):
The GI Research Foundation was able to produce this podcast with a sponsorship from Abbvie.
Never be afraid to advocate for yourself or for your child,
because as we were talking about, you know them best, they know themselves best.
Welcome to another episode of Visceral, the podcast from the GI Research Foundation.
(00:31):
I'm Anna Gomberg, and today I am talking with pediatric gastroenterologist Amelia Kellar,
who is our brand new IBD specialist for pediatrics. She works primarily at the Comer Hospital for
the University of Chicago and is also the director of the Pediatric Intestinal Ultrasound Program.
And she came here from Mount Sinai in New York, where we have many, many wonderful colleagues and
(00:55):
many of our University of Chicago alums have gone. And so we are so very excited to be working with
Dr. Kellar and to learn a little bit more about pediatric IBD and what Crohn's disease and also
the colitis is like for children and how treating children with pediatric IBD is different than
treating adults. So welcome, Dr. Kellar. Thank you so much for having me. We are so, so thrilled. I
(01:21):
have to tell you, I have been looking forward to your arrival and looking forward to you starting
and really investing in our pediatric GI and IBD program since we since I learned you were going
to be hired. I'm just really could not be more thrilled to have your expertise with us. So can
you tell us a little bit about pediatric IBD in a general way? So I think the important thing to
(01:44):
know is that IBD can be diagnosed at any age. So we do and it is more rare, but we can diagnose IBD
even in infants. And if you are less than six years of age, we consider that very early onset IBD.
But typical IBD is usually diagnosed sort of in your youth. So adolescents, teenagers into young
(02:08):
adulthood. And then I know on the adult side of things, they do see another sort of period of
higher diagnosis into adulthood. But those would be the age groups that I would typically see as a
new diagnosis. I think that one of the the unique considerations for our pediatric patients is you
have to think about this is such a critical time in their lives, not only socially, developmentally,
(02:33):
but for growth. This is the time where you're getting taller, you're going through puberty. And
that comes with so many different things that we have to consider in our pediatric patients. So
I think you raise a very good point in that pediatric IBD is very different. And there's lots
of different things we have to consider in these patients. Completely. You mentioned growth. Does
(02:58):
pediatric IBD, Crohn's disease and ulcerative colitis impact the growth of children? Absolutely.
So actually, many times we get referrals for suspicion of IBD because a child's growth has
been impacted. So particularly with Crohn's disease, they may not have really overt symptoms.
They may just have some grumbling abdominal pain, but it may not be like ulcerative colitis where
(03:23):
we see lots of bloody diarrhea. But they may have poor growth and generalized abdominal pain. And
that's much harder to pick up on. And so the original referral could come to us for something
like that. And then certainly as gastroenterologists and particularly pediatric gastroenterologists,
we have to look at all different components. So what's their nutrition? Were they taking in
(03:45):
enough calories? And if they are taking in enough calories, then why aren't they growing to their
full potential? I'm not exactly sure how I want to ask this, but what do you tell parents when you
meet with them for the first time about their child having Crohn's disease or ulcerative colitis?
What kind of questions do they ask? And how do you answer them? You know, I see a lot of families
(04:08):
who, when they are finally diagnosed, they say, what did we miss? Yeah. I always say,
please never do that, right? Because we know, I mean, there's so much we don't know about IBD.
And that's why it's so important that we continue to research. But we know that there is an element
(04:32):
of genetic predisposition, and that we know that there's so many environmental factors that can
then trigger things at any time, whether it be dietary triggers or infectious triggers or things
like that. So it's always that combination of genetic and environment. And so there really is
nothing that anyone has missed and no one is at fault. But what I always say to parents too, and
(04:57):
especially once you've been diagnosed, and then you're ever going through the process and you feel
like something is different with your child, or they tell you something, I don't know what it is,
but I don't feel well. I always feel like the parent's spidey sense is always accurate. And so
when a patient or a family member comes to me and says, I just, I know something isn't right,
(05:22):
then I think as physicians, we do really have to pay attention.
Every one who is a parent knows exactly what that means, I think. The idea that like,
I know my child, I know what they're experiencing doesn't seem normal and needs further investigation,
needs somebody to really look into this. And getting back to a little bit more about what you
specialize in and what you work on, what are the big approaches to research in pediatric IVD?
(05:46):
What are some projects that you're interested in starting or continuing at the University of
Chicago? So there's so many things that I'm interested in. So obviously my big research
interest is intestinal ultrasound. And I think, you know, one of my mentors, Dr. Ruben, has told
me this, that you really have to think about ultrasound and ultrasound research as it's such
(06:09):
an amazing tool that we can use to answer other research questions as well. So looking at responses
to therapy, looking at investigation of other symptoms or comorbidities or things like that,
like ultrasound is a tool that we can use for diagnosis and monitoring, but also to answer
many of our other research questions. So certainly research involving intestinal ultrasound is my
(06:34):
passion. Through my role, I'm on the international bowel ultrasound group IBIS. I'm on a member of
their pediatric committee. So it's myself and three other pediatric gastroenterologists who
specialize in intestinal ultrasound. And one of our big initiatives is actually creating a
(06:55):
multicenter database where all of our patients with IBD that undergo ultrasounds with their
permission, we enter that data. So whatever their examination results are, and we include what blood
work they've had done, if they've had endoscopy done, what their ultrasound findings are,
(07:15):
into a multicenter database where then we can do a variety of different studies with that data.
And that will be at four centers within North America. So if you can imagine the amount of
patients that we hope to have in that bank for a variety of research projects, I think that is so
vital into so many of our research, answering so many of our research questions. So we're very
(07:40):
excited about that. Actually, one of the projects that we just presented some of our preliminary
results for is with intestinal ultrasound, one of the things that we measure as a marker of
inflammation is how thick the bowel wall is. So what I always tell patients and families when
(08:00):
your bowel is happy, your bowel wall should be nice and thin. When your bowel is upset, I always
think of it kind of like when you stub your toe, what happens? Well, it gets swollen, it gets lots
of blood flow goes to it, it gets red, it gets hot, it's painful. The same thing you can almost
imagine with the bowel wall in that the layers get thicker, lots of blood flow goes to it, and we
(08:24):
measure that. But when we look at bowel ultrasound for children, what we've noticed as pediatric
gastroenterologists is that the normal values for bowel wall thickness in children are different
from those adults. But all of the studies usually in medicine are done in adults first. And so what
(08:45):
we've been using as our standard values are actually extrapolated from adults. So we collected from
our multiple centers, all of our ultrasounds and our patients who are willing to be included,
and we've actually established new normalized values specific to children. So this can really guide
(09:05):
all pediatric gastroenterologists who are performing and interpreting intestinal ultrasound in that
children are different from adults, we need different criteria. So this will allow us to
accurately evaluate disease severity with ultrasound in our pediatric population. So that's
one of our big initiatives. And then one of the, sorry, go ahead. No, that's amazing. And also
(09:31):
just like it's sort of incredible to think that this is really the very beginning. This is sort of
when you read medical papers from 100 years ago, this reminds me of that kind of work where you're
talking about like establishing those very specific parameters that then are going to guide
a whole research program. And I mean, it's a new paradigm, it really is. Can you talk a little bit
(09:57):
about how you do intestinal ultrasound in children and the diagnostics specifically? What does that
mean? I know that that is an area in which you specialize. And so I'd love to just like know
more about what that's like from your end. Yeah. So if you think about when we say intestinal
ultrasound, if you can imagine just a regular general abdominal ultrasound, it is essentially
(10:22):
the exact same technology. So ultrasound itself, it just uses sound waves. So it's, it doesn't come
with any radiation, which is particularly important in our pediatric patients. Because before we
really were using ultrasound, a lot of the other imaging that we use would be CT, which comes with
radiation or MRI and MRI isn't radiation, but often it requires children to lay still for long
(10:47):
periods of time or to drink a contrast agent when you're not feeling so great. That's not exactly
what you want to be doing. Or we would use endoscopy, which is still a very valuable test,
but we've got to put you to sleep. We've got to do a prep. But with ultrasounds, it actually uses
sound waves to reproduce images of the intestines based on how much sound is absorbed and reflected
(11:11):
with these sound waves. And then you get your picture on the screen of intestinal ultrasound. So
the things that I love about it are, I incorporate it into my clinic visit. So it's almost like part
of my physical exam. You don't have to prep for it. You can eat, you can not eat whatever you want
to do. And then we can actually look at things in real time and have a discussion. So it's really
(11:35):
just an ultrasound exam where we put the ultrasound transducer onto your belly. And we move it around
with some jelly, doesn't hurt at all. And then we talk about what we see on the screen. If it's a
really quick exam, it can be 10 minutes or under. If we have something that we're looking at a little
bit more closely, then it can take longer, but it really just depends on what we're doing that to
(12:00):
end what we're looking at. How do children respond when they see those images on the screen? What
is it like? And how, I mean, how does a six year old respond? How does a 12 year old respond? Oh,
my goodness. So it's actually funny you say that because I had a very young child this morning who
is unfortunately quite ill and in hospital, but they had called me and asked me if I could do an
(12:23):
ultrasound on her. And I said, absolutely. And I think that's, that is one of my favorite parts
is how involved the child can be and how it almost seems fun, even when they're not feeling well,
because you can explain what you're seeing on the screen. And I also love the progression in that
(12:47):
they see it the first time, but then I incorporate this into all of my visits. So usually by the
third visit, I find number one, the child is asking me when they're going to have their ultrasound
because they're usually excited. Yeah. And number two, they can point out things to me
on their ultrasound because they're so used to the findings themselves, like they'll even say,
(13:10):
oh, like that looks really thin or there isn't any color there. I know that's good.
So I think that's, that's one of the things I just really love about it is I feel like
that is such an important component of your medical care is you should be involved. You
should be involved. You should understand what's going on with your body and then be involved
(13:33):
in the decision making. We should have a two-way conversation. And I think that's just,
I could talk forever about it, but many things I love about it.
It's incredible. I can see how that would be so
validating and reassuring also to a patient that the idea that like, it is not, I am feeling bad
(13:54):
and it is not just in my head or it's not just something that I need to get over that I can see
it right there on the screen and there maybe even for their parents to see. Again, because this,
because sometimes it's my understanding that sometimes IBD can be really a gradual kind of
adapting to over and over again new normals of, okay, well, no, I just, I can't really eat that or
(14:18):
I can't really do this and I'm going to the bathroom this many times a day and that's just
sort of how I live my life. That sounds so encouraging. Does it also precipitate the
discussion of treatment? Does it make that more apparent that treatment needs to be sought or
help people understand the medical therapies that come next?
(14:38):
I really think so. I was going to say that like to your point, I think it's equally helpful if not
more when a patient is feeling well and especially my teenage patients who are feeling well and don't
want to take medication, but we know that the long-term impact of that is worsening inflammation,
(15:05):
scar tissue accumulation, need for surgery, things that we don't want to have to be discussing.
And I think what's really helpful about ultrasound is they can see that too. They can see
even though they're feeling well, their bowel wall looks really thick. It has lots of blood
(15:26):
flow. It doesn't look happy. It doesn't look healthy. And then we can have a more honest
discussion about what's going to happen if we allow that to continue untreated. I think, I mean,
I'm a very visual person. So I think if I try to put myself in the patient's position,
(15:48):
that would help me to see it visually, to see it in real time, what's happening inside of my body,
to help facilitate that discussion. And then it also, you know, it doesn't demean how difficult it is
to have a chronic disease and to not want to have to be on medication when other people don't have
to be on medication. But I do think sometimes it helps them come to terms with that, that they do
(16:15):
have a disease, but that that disease is something that we can treat. And we are fortunate to have
some amazing therapies that we can use. And we can also use ultrasound to monitor their response
to therapy. And we can monitor it much more closely, I would argue, than traditionally
like colonoscopy, because we wouldn't want to do that every month, you know, like with ultrasound,
(16:38):
I can bring you back in a month, in two months, and we can do an ultrasound and we can see if
that medication is working for you. So I'm just so grateful that we have it as a tool.
So what are the medical therapies that are available to treat Crohn's disease and all sort
of colitis for patients that are... Well, that's a very loaded question, because one of the
(17:00):
frustrating things for us as pediatric gastroenterologists is that medications are always approved
in adults first, because the clinical trials are done in adults. There are very, very few clinical
trials that are done in pediatric patients for a variety of reasons. And many of them understandable,
(17:22):
certainly if a child is very sick, many of the traditional designs of clinical trials
require you to be randomized to either receive therapy or not receive therapy. And not receiving
therapy in a sick child is not something anyone wants to do, certainly. So coming back to your
(17:42):
question, there are certainly less therapies that are available for children than adults, but we
do have some... Because of how much research is ongoing in terms of new drugs, within the last
couple months, we've had at least two new drugs that have become available in adults. And certainly
(18:05):
we can get access for compassionate coverage if you've tried other medications. And then
you do require one of the newer drugs. Sometimes we are able to get access.
Well, I know that there are a lot of different cases... There are a lot of different classes
of therapy. There's biologic therapies. Are there biologic therapies that are available
for pediatric patients? Are they kind of the same where we have our Jack inhibitors available?
(18:30):
That would be one of the things that, when I'm saying we can get access to it, if you have tried
some of our more traditional therapies that are sort of the first step and you haven't responded
well to them and you're continuing to get sicker, then we can get access to some of the small
molecule medications. So you're exactly right. Our traditional therapies would be, if you have
(18:55):
moderate to severe Crohn's disease or ulcerative colitis would be biologic therapies. Then the
one that has the longest experience in children is infliximab, which is our IV medication.
Infliximab, more recently, it has become available in subcutaneous, so an under-the-skin
(19:17):
injection that you can do at home that's not yet available for us, but is recently approved.
So that will be coming out at least in adults in the next year or so, I believe.
And then we also have humera atalimumab, which is similar to infliximab, but it's one that you
(19:39):
can give yourself at home as an injectable drug and it has the same mechanism as infliximab.
It's just that the sort of structure of how it's made is slightly different, but it's essentially
the same kind of drug. And then for ulcerative colitis, another drug that we use, usually if
(20:00):
you have a bit more milder disease, is Vetylizimab or Intibio, and that's also an injectable drug,
so you would go for infusions for that. And then we also have eustachinumab or stilera,
and that can be used for Crohn's disease or ulcerative colitis. And that one is one where
(20:20):
you do the initial dosing. When we're trying to get a high level of drug in your body, you do
IV dose, and then you can take it subcutaneous at home, inject it yourself.
And there's so many options that...
It's far more than I remember many of the people I've trained under, they recall having
like really nothing or just having infliximab. So the fact that we have that many biologics,
(20:48):
and now we have access to small molecule medications like Tofacitinib,
and then more recently, Upatacitiniborinvo, which is the same mechanism, but a little bit more
targeted of a mechanism, those are available if you have more severe disease and you have tried
(21:11):
a biologic medication and did not respond to it.
Yeah. I know that parents are always really wanting to do what's very best for their children and
are really worried about or feel some anxiety about medications that seem to be an intense step.
But the idea that this is really first line treatment for patients is really important.
(21:32):
And the fact that those options do exist and that they have been used safely in children for such a
long time, and children have so much success on them, success taking those medications is so
wonderful, especially when some of us remember when children were given a lot of steroids and
just kind of hope for the best for as long as they could manage. And we saw all kinds of complications
(21:57):
with that as well. So the idea that there are effective medications, they are safe, they're
much safer than being on prognesone for a couple of years and having all of the bad things that
come along with that. So this is just really such a different time.
Another, to your point, another exciting thing that is happening in terms of medications. And I
(22:21):
was fortunate enough to work with Dr. Marla Dabinski at Mount Sinai and in patients who have
particularly aggressive disease and have not responded to one drug alone or maybe had a
partial response, but we're showing us they really did need maybe a bit of a different
(22:42):
mechanism of a drug or another drug. She had used dual advanced therapy, which is the combination
of two different drugs. So you could use a biologic medication with a small molecule medication.
And actually, I was fortunate enough to work on a project with her where we actually took a cohort
(23:04):
of her patients who she was doing this in who had very aggressive disease, and they were kind
enough to let us use their test results to study this. And I'll be presenting actually next week
at AIBD results of that. And one of the things, albeit it's a small group of because they're
(23:24):
pediatric patients, but I am excited that we are presenting all of the patients.
There were no major safety concerns above and beyond that of monotherapy. So one therapy alone.
And so this is for patients who do need it in these really aggressive cases, there are options
(23:47):
with all of these medications and combining medications. So this is an area where I'm really
excited to do more research as well.
If there was one thing that you could tell parents of pediatric patients or people who think that
their kid might need additional care for their GI symptoms, what would you tell patients and parents?
What piece of advice would you give?
Well, I would say if you're not yet diagnosed, but you have a suspicion that something I would say
(24:13):
any gastrointestinal issue, never be afraid to advocate for yourself or for your child.
Because as we were talking about, you know, you know them best, they know themselves best too.
So I think first seeking out if you have a primary care provider, going to them, having an
(24:34):
examination, having a bit of a workup and then they can always refer to us.
I think there are so many of us passionate, especially pediatric gastroenterologists.
Of course.
So many adult gastroenterologists will argue they're equally passionate, but we are always
(24:56):
willing to see people. And so I would say just never hesitate in advocating for yourself or
for your child if you feel like something is off.
Completely. This is what we talk about every month at Support Group is you don't have to live like
this. You have to get the care that you need to feel better. And you should not rest. And I mean,
(25:18):
and I think most parents will go to the literally go to the ends of the earth to help their children
feel better. And that's really what that is what being a parent is all about. So this is so amazing.
I could talk to you for all day. This is great. I know that we will be hearing a lot more from you
(25:40):
as your research continues, as the intestinal ultrasound clinics continue to build. And I'm
just looking so forward to talking to you again. So thank you very much. Thank you, Dr. Amelia Keller.
And I can't wait to see you at Comer at the University of Chicago or at our River East location.
And hopefully very soon and in the new year. Thank you. Looking forward to it. How can people find you?
(26:07):
So I have my main inflammatory bowel disease clinics at Comer Children's Hospital. So you can
certainly find me on the UChicago website and book through there. And then there is also the
opportunity just because I am the only pediatric provider in quite a large area providing intestinal
(26:27):
ultrasound. If you do already have a pediatric gastroenterologist, but you or they would like to
have an intestinal ultrasound, then they can actually refer to me to just perform the intestinal
ultrasound where you would still continue to be followed by your pediatric gastroenterologist.
(26:48):
But you can come and just have an ultrasound as part of your care. So that is also you can find
any information about me on the UChicago website for booking. Awesome. Oh, thank you. Well,
I think there'll probably be a line out the door now. So I hope so. I have this beautiful machine.
I did not know it worked. That would be incredible. Well, thank you so very much. I really appreciate it.
(27:12):
Yeah, no problem. All right. Talk to you soon.
Thank you for listening to this episode of the podcast, Visceral, from the GI Research Foundation.
This episode was written and produced by me, Anna Gomberg, and edited and mixed by the incredible
Mike Collins Gowden who also composed our theme music. We hope you will join us next time. Until
then, to access other podcasts and learn more about research to treat, prevent, and cure digestive
(27:35):
diseases, as well as access additional educational materials, please visit the website at GIResearch
Foundation.org and follow us on Facebook, Twitter, and LinkedIn. Thank you again to Abbey for making
this podcast possible.
This podcast, Visceral, is the production of the GI Research Foundation.
(00:03):
The GI Research Foundation was able to produce this podcast with a sponsorship from Abbvie.
Never be afraid to advocate for yourself or for your child,
because as we were talking about, you know them best, they know themselves best.
Welcome to another episode of Visceral, the podcast from the GI Research Foundation.
(00:31):
I'm Anna Gomberg, and today I am talking with pediatric gastroenterologist Amelia Kellar,
who is our brand new IBD specialist for pediatrics. She works primarily at the Comer Hospital for
the University of Chicago and is also the director of the Pediatric Intestinal Ultrasound Program.
And she came here from Mount Sinai in New York, where we have many, many wonderful colleagues and
(00:55):
many of our University of Chicago alums have gone. And so we are so very excited to be working with
Dr. Kellar and to learn a little bit more about pediatric IBD and what Crohn's disease and also
the colitis is like for children and how treating children with pediatric IBD is different than
treating adults. So welcome, Dr. Kellar. Thank you so much for having me. We are so, so thrilled. I
(01:21):
have to tell you, I have been looking forward to your arrival and looking forward to you starting
and really investing in our pediatric GI and IBD program since we since I learned you were going
to be hired. I'm just really could not be more thrilled to have your expertise with us. So can
you tell us a little bit about pediatric IBD in a general way? So I think the important thing to
(01:44):
know is that IBD can be diagnosed at any age. So we do and it is more rare, but we can diagnose IBD
even in infants. And if you are less than six years of age, we consider that very early onset IBD.
But typical IBD is usually diagnosed sort of in your youth. So adolescents, teenagers into young
(02:08):
adulthood. And then I know on the adult side of things, they do see another sort of period of
higher diagnosis into adulthood. But those would be the age groups that I would typically see as a
new diagnosis. I think that one of the the unique considerations for our pediatric patients is you
have to think about this is such a critical time in their lives, not only socially, developmentally,
(02:33):
but for growth. This is the time where you're getting taller, you're going through puberty. And
that comes with so many different things that we have to consider in our pediatric patients. So
I think you raise a very good point in that pediatric IBD is very different. And there's lots
of different things we have to consider in these patients. Completely. You mentioned growth. Does
(02:58):
pediatric IBD, Crohn's disease and ulcerative colitis impact the growth of children? Absolutely.
So actually, many times we get referrals for suspicion of IBD because a child's growth has
been impacted. So particularly with Crohn's disease, they may not have really overt symptoms.
They may just have some grumbling abdominal pain, but it may not be like ulcerative colitis where
(03:23):
we see lots of bloody diarrhea. But they may have poor growth and generalized abdominal pain. And
that's much harder to pick up on. And so the original referral could come to us for something
like that. And then certainly as gastroenterologists and particularly pediatric gastroenterologists,
we have to look at all different components. So what's their nutrition? Were they taking in
(03:45):
enough calories? And if they are taking in enough calories, then why aren't they growing to their
full potential? I'm not exactly sure how I want to ask this, but what do you tell parents when you
meet with them for the first time about their child having Crohn's disease or ulcerative colitis?
What kind of questions do they ask? And how do you answer them? You know, I see a lot of families
(04:08):
who, when they are finally diagnosed, they say, what did we miss? Yeah. I always say,
please never do that, right? Because we know, I mean, there's so much we don't know about IBD.
And that's why it's so important that we continue to research. But we know that there is an element
(04:32):
of genetic predisposition, and that we know that there's so many environmental factors that can
then trigger things at any time, whether it be dietary triggers or infectious triggers or things
like that. So it's always that combination of genetic and environment. And so there really is
nothing that anyone has missed and no one is at fault. But what I always say to parents too, and
(04:57):
especially once you've been diagnosed, and then you're ever going through the process and you feel
like something is different with your child, or they tell you something, I don't know what it is,
but I don't feel well. I always feel like the parent's spidey sense is always accurate. And so
when a patient or a family member comes to me and says, I just, I know something isn't right,
(05:22):
then I think as physicians, we do really have to pay attention.
Every one who is a parent knows exactly what that means, I think. The idea that like,
I know my child, I know what they're experiencing doesn't seem normal and needs further investigation,
needs somebody to really look into this. And getting back to a little bit more about what you
specialize in and what you work on, what are the big approaches to research in pediatric IVD?
(05:46):
What are some projects that you're interested in starting or continuing at the University of
Chicago? So there's so many things that I'm interested in. So obviously my big research
interest is intestinal ultrasound. And I think, you know, one of my mentors, Dr. Ruben, has told
me this, that you really have to think about ultrasound and ultrasound research as it's such
(06:09):
an amazing tool that we can use to answer other research questions as well. So looking at responses
to therapy, looking at investigation of other symptoms or comorbidities or things like that,
like ultrasound is a tool that we can use for diagnosis and monitoring, but also to answer
many of our other research questions. So certainly research involving intestinal ultrasound is my
(06:34):
passion. Through my role, I'm on the international bowel ultrasound group IBIS. I'm on a member of
their pediatric committee. So it's myself and three other pediatric gastroenterologists who
specialize in intestinal ultrasound. And one of our big initiatives is actually creating a
(06:55):
multicenter database where all of our patients with IBD that undergo ultrasounds with their
permission, we enter that data. So whatever their examination results are, and we include what blood
work they've had done, if they've had endoscopy done, what their ultrasound findings are,
(07:15):
into a multicenter database where then we can do a variety of different studies with that data.
And that will be at four centers within North America. So if you can imagine the amount of
patients that we hope to have in that bank for a variety of research projects, I think that is so
vital into so many of our research, answering so many of our research questions. So we're very
(07:40):
excited about that. Actually, one of the projects that we just presented some of our preliminary
results for is with intestinal ultrasound, one of the things that we measure as a marker of
inflammation is how thick the bowel wall is. So what I always tell patients and families when
(08:00):
your bowel is happy, your bowel wall should be nice and thin. When your bowel is upset, I always
think of it kind of like when you stub your toe, what happens? Well, it gets swollen, it gets lots
of blood flow goes to it, it gets red, it gets hot, it's painful. The same thing you can almost
imagine with the bowel wall in that the layers get thicker, lots of blood flow goes to it, and we
(08:24):
measure that. But when we look at bowel ultrasound for children, what we've noticed as pediatric
gastroenterologists is that the normal values for bowel wall thickness in children are different
from those adults. But all of the studies usually in medicine are done in adults first. And so what
(08:45):
we've been using as our standard values are actually extrapolated from adults. So we collected from
our multiple centers, all of our ultrasounds and our patients who are willing to be included,
and we've actually established new normalized values specific to children. So this can really guide
(09:05):
all pediatric gastroenterologists who are performing and interpreting intestinal ultrasound in that
children are different from adults, we need different criteria. So this will allow us to
accurately evaluate disease severity with ultrasound in our pediatric population. So that's
one of our big initiatives. And then one of the, sorry, go ahead. No, that's amazing. And also
(09:31):
just like it's sort of incredible to think that this is really the very beginning. This is sort of
when you read medical papers from 100 years ago, this reminds me of that kind of work where you're
talking about like establishing those very specific parameters that then are going to guide
a whole research program. And I mean, it's a new paradigm, it really is. Can you talk a little bit
(09:57):
about how you do intestinal ultrasound in children and the diagnostics specifically? What does that
mean? I know that that is an area in which you specialize. And so I'd love to just like know
more about what that's like from your end. Yeah. So if you think about when we say intestinal
ultrasound, if you can imagine just a regular general abdominal ultrasound, it is essentially
(10:22):
the exact same technology. So ultrasound itself, it just uses sound waves. So it's, it doesn't come
with any radiation, which is particularly important in our pediatric patients. Because before we
really were using ultrasound, a lot of the other imaging that we use would be CT, which comes with
radiation or MRI and MRI isn't radiation, but often it requires children to lay still for long
(10:47):
periods of time or to drink a contrast agent when you're not feeling so great. That's not exactly
what you want to be doing. Or we would use endoscopy, which is still a very valuable test,
but we've got to put you to sleep. We've got to do a prep. But with ultrasounds, it actually uses
sound waves to reproduce images of the intestines based on how much sound is absorbed and reflected
(11:11):
with these sound waves. And then you get your picture on the screen of intestinal ultrasound. So
the things that I love about it are, I incorporate it into my clinic visit. So it's almost like part
of my physical exam. You don't have to prep for it. You can eat, you can not eat whatever you want
to do. And then we can actually look at things in real time and have a discussion. So it's really
(11:35):
just an ultrasound exam where we put the ultrasound transducer onto your belly. And we move it around
with some jelly, doesn't hurt at all. And then we talk about what we see on the screen. If it's a
really quick exam, it can be 10 minutes or under. If we have something that we're looking at a little
bit more closely, then it can take longer, but it really just depends on what we're doing that to
(12:00):
end what we're looking at. How do children respond when they see those images on the screen? What
is it like? And how, I mean, how does a six year old respond? How does a 12 year old respond? Oh,
my goodness. So it's actually funny you say that because I had a very young child this morning who
is unfortunately quite ill and in hospital, but they had called me and asked me if I could do an
(12:23):
ultrasound on her. And I said, absolutely. And I think that's, that is one of my favorite parts
is how involved the child can be and how it almost seems fun, even when they're not feeling well,
because you can explain what you're seeing on the screen. And I also love the progression in that
(12:47):
they see it the first time, but then I incorporate this into all of my visits. So usually by the
third visit, I find number one, the child is asking me when they're going to have their ultrasound
because they're usually excited. Yeah. And number two, they can point out things to me
on their ultrasound because they're so used to the findings themselves, like they'll even say,
(13:10):
oh, like that looks really thin or there isn't any color there. I know that's good.
So I think that's, that's one of the things I just really love about it is I feel like
that is such an important component of your medical care is you should be involved. You
should be involved. You should understand what's going on with your body and then be involved
(13:33):
in the decision making. We should have a two-way conversation. And I think that's just,
I could talk forever about it, but many things I love about it.
It's incredible. I can see how that would be so
validating and reassuring also to a patient that the idea that like, it is not, I am feeling bad
(13:54):
and it is not just in my head or it's not just something that I need to get over that I can see
it right there on the screen and there maybe even for their parents to see. Again, because this,
because sometimes it's my understanding that sometimes IBD can be really a gradual kind of
adapting to over and over again new normals of, okay, well, no, I just, I can't really eat that or
(14:18):
I can't really do this and I'm going to the bathroom this many times a day and that's just
sort of how I live my life. That sounds so encouraging. Does it also precipitate the
discussion of treatment? Does it make that more apparent that treatment needs to be sought or
help people understand the medical therapies that come next?
(14:38):
I really think so. I was going to say that like to your point, I think it's equally helpful if not
more when a patient is feeling well and especially my teenage patients who are feeling well and don't
want to take medication, but we know that the long-term impact of that is worsening inflammation,
(15:05):
scar tissue accumulation, need for surgery, things that we don't want to have to be discussing.
And I think what's really helpful about ultrasound is they can see that too. They can see
even though they're feeling well, their bowel wall looks really thick. It has lots of blood
(15:26):
flow. It doesn't look happy. It doesn't look healthy. And then we can have a more honest
discussion about what's going to happen if we allow that to continue untreated. I think, I mean,
I'm a very visual person. So I think if I try to put myself in the patient's position,
(15:48):
that would help me to see it visually, to see it in real time, what's happening inside of my body,
to help facilitate that discussion. And then it also, you know, it doesn't demean how difficult it is
to have a chronic disease and to not want to have to be on medication when other people don't have
to be on medication. But I do think sometimes it helps them come to terms with that, that they do
(16:15):
have a disease, but that that disease is something that we can treat. And we are fortunate to have
some amazing therapies that we can use. And we can also use ultrasound to monitor their response
to therapy. And we can monitor it much more closely, I would argue, than traditionally
like colonoscopy, because we wouldn't want to do that every month, you know, like with ultrasound,
(16:38):
I can bring you back in a month, in two months, and we can do an ultrasound and we can see if
that medication is working for you. So I'm just so grateful that we have it as a tool.
So what are the medical therapies that are available to treat Crohn's disease and all sort
of colitis for patients that are... Well, that's a very loaded question, because one of the
(17:00):
frustrating things for us as pediatric gastroenterologists is that medications are always approved
in adults first, because the clinical trials are done in adults. There are very, very few clinical
trials that are done in pediatric patients for a variety of reasons. And many of them understandable,
(17:22):
certainly if a child is very sick, many of the traditional designs of clinical trials
require you to be randomized to either receive therapy or not receive therapy. And not receiving
therapy in a sick child is not something anyone wants to do, certainly. So coming back to your
(17:42):
question, there are certainly less therapies that are available for children than adults, but we
do have some... Because of how much research is ongoing in terms of new drugs, within the last
couple months, we've had at least two new drugs that have become available in adults. And certainly
(18:05):
we can get access for compassionate coverage if you've tried other medications. And then
you do require one of the newer drugs. Sometimes we are able to get access.
Well, I know that there are a lot of different cases... There are a lot of different classes
of therapy. There's biologic therapies. Are there biologic therapies that are available
for pediatric patients? Are they kind of the same where we have our Jack inhibitors available?
(18:30):
That would be one of the things that, when I'm saying we can get access to it, if you have tried
some of our more traditional therapies that are sort of the first step and you haven't responded
well to them and you're continuing to get sicker, then we can get access to some of the small
molecule medications. So you're exactly right. Our traditional therapies would be, if you have
(18:55):
moderate to severe Crohn's disease or ulcerative colitis would be biologic therapies. Then the
one that has the longest experience in children is infliximab, which is our IV medication.
Infliximab, more recently, it has become available in subcutaneous, so an under-the-skin
(19:17):
injection that you can do at home that's not yet available for us, but is recently approved.
So that will be coming out at least in adults in the next year or so, I believe.
And then we also have humera atalimumab, which is similar to infliximab, but it's one that you
(19:39):
can give yourself at home as an injectable drug and it has the same mechanism as infliximab.
It's just that the sort of structure of how it's made is slightly different, but it's essentially
the same kind of drug. And then for ulcerative colitis, another drug that we use, usually if
(20:00):
you have a bit more milder disease, is Vetylizimab or Intibio, and that's also an injectable drug,
so you would go for infusions for that. And then we also have eustachinumab or stilera,
and that can be used for Crohn's disease or ulcerative colitis. And that one is one where
(20:20):
you do the initial dosing. When we're trying to get a high level of drug in your body, you do
IV dose, and then you can take it subcutaneous at home, inject it yourself.
And there's so many options that...
It's far more than I remember many of the people I've trained under, they recall having
like really nothing or just having infliximab. So the fact that we have that many biologics,
(20:48):
and now we have access to small molecule medications like Tofacitinib,
and then more recently, Upatacitiniborinvo, which is the same mechanism, but a little bit more
targeted of a mechanism, those are available if you have more severe disease and you have tried
(21:11):
a biologic medication and did not respond to it.
Yeah. I know that parents are always really wanting to do what's very best for their children and
are really worried about or feel some anxiety about medications that seem to be an intense step.
But the idea that this is really first line treatment for patients is really important.
(21:32):
And the fact that those options do exist and that they have been used safely in children for such a
long time, and children have so much success on them, success taking those medications is so
wonderful, especially when some of us remember when children were given a lot of steroids and
just kind of hope for the best for as long as they could manage. And we saw all kinds of complications
(21:57):
with that as well. So the idea that there are effective medications, they are safe, they're
much safer than being on prognesone for a couple of years and having all of the bad things that
come along with that. So this is just really such a different time.
Another, to your point, another exciting thing that is happening in terms of medications. And I
(22:21):
was fortunate enough to work with Dr. Marla Dabinski at Mount Sinai and in patients who have
particularly aggressive disease and have not responded to one drug alone or maybe had a
partial response, but we're showing us they really did need maybe a bit of a different
(22:42):
mechanism of a drug or another drug. She had used dual advanced therapy, which is the combination
of two different drugs. So you could use a biologic medication with a small molecule medication.
And actually, I was fortunate enough to work on a project with her where we actually took a cohort
(23:04):
of her patients who she was doing this in who had very aggressive disease, and they were kind
enough to let us use their test results to study this. And I'll be presenting actually next week
at AIBD results of that. And one of the things, albeit it's a small group of because they're
(23:24):
pediatric patients, but I am excited that we are presenting all of the patients.
There were no major safety concerns above and beyond that of monotherapy. So one therapy alone.
And so this is for patients who do need it in these really aggressive cases, there are options
(23:47):
with all of these medications and combining medications. So this is an area where I'm really
excited to do more research as well.
If there was one thing that you could tell parents of pediatric patients or people who think that
their kid might need additional care for their GI symptoms, what would you tell patients and parents?
What piece of advice would you give?
Well, I would say if you're not yet diagnosed, but you have a suspicion that something I would say
(24:13):
any gastrointestinal issue, never be afraid to advocate for yourself or for your child.
Because as we were talking about, you know, you know them best, they know themselves best too.
So I think first seeking out if you have a primary care provider, going to them, having an
(24:34):
examination, having a bit of a workup and then they can always refer to us.
I think there are so many of us passionate, especially pediatric gastroenterologists.
Of course.
So many adult gastroenterologists will argue they're equally passionate, but we are always
(24:56):
willing to see people. And so I would say just never hesitate in advocating for yourself or
for your child if you feel like something is off.
Completely. This is what we talk about every month at Support Group is you don't have to live like
this. You have to get the care that you need to feel better. And you should not rest. And I mean,
(25:18):
and I think most parents will go to the literally go to the ends of the earth to help their children
feel better. And that's really what that is what being a parent is all about. So this is so amazing.
I could talk to you for all day. This is great. I know that we will be hearing a lot more from you
(25:40):
as your research continues, as the intestinal ultrasound clinics continue to build. And I'm
just looking so forward to talking to you again. So thank you very much. Thank you, Dr. Amelia Keller.
And I can't wait to see you at Comer at the University of Chicago or at our River East location.
And hopefully very soon and in the new year. Thank you. Looking forward to it. How can people find you?
(26:07):
So I have my main inflammatory bowel disease clinics at Comer Children's Hospital. So you can
certainly find me on the UChicago website and book through there. And then there is also the
opportunity just because I am the only pediatric provider in quite a large area providing intestinal
(26:27):
ultrasound. If you do already have a pediatric gastroenterologist, but you or they would like to
have an intestinal ultrasound, then they can actually refer to me to just perform the intestinal
ultrasound where you would still continue to be followed by your pediatric gastroenterologist.
(26:48):
But you can come and just have an ultrasound as part of your care. So that is also you can find
any information about me on the UChicago website for booking. Awesome. Oh, thank you. Well,
I think there'll probably be a line out the door now. So I hope so. I have this beautiful machine.
I did not know it worked. That would be incredible. Well, thank you so very much. I really appreciate it.
(27:12):
Yeah, no problem. All right. Talk to you soon.
Thank you for listening to this episode of the podcast, Visceral, from the GI Research Foundation.
This episode was written and produced by me, Anna Gomberg, and edited and mixed by the incredible
Mike Collins Gowden who also composed our theme music. We hope you will join us next time. Until
then, to access other podcasts and learn more about research to treat, prevent, and cure digestive
(27:35):
diseases, as well as access additional educational materials, please visit the website at GIResearch
Foundation.org and follow us on Facebook, Twitter, and LinkedIn. Thank you again to Abbey for making
this podcast possible.
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