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COVID-19 & Pediatric IBD: Special Guidance for Families
Robbyn Sockolow MD, Chief of Pediatric Gastroenterology, discusses Pediatric IBD and COVID-19. She offers tips and calm guidance for nervous parents of children with IBD. She shares medication guidance, infusion protocol, what we know about COVID relative risk and how it manifests in IBD & children and ways to help ease our kids anxiety and help them with stress reduction.
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Learn more about Robbyn Sockolow, MD
Robbyn Sockolow, MD
Dr. Robbyn Sockolow is Chief of the Division of Pediatric Gastroenterology and Nutrition, Attending Pediatrician at NewYork-Presbyterian Phyllis and David Komansky Children's Hospital at Weill Cornell Medical Center. She is also a Professor of Clinical Pediatrics at Weill Cornell Medicine. Dr. Sockolow is board certified in pediatrics and pediatric gastroenterology and is also a certified Physician Nutrition Specialist.Learn more about Robbyn Sockolow, MD
Transcription:
COVID-19 & Pediatric IBD: Special Guidance for Families
Melanie Cole (Host): This is the Weill Cornell Medicine Kids Health podcast on COVID-19 dated April 6, 2020.
There’s no handbook for your child’s health, but we do have a podcast featuring worldclass clinical and research physicians covering everything from your child’s allergies to zinc levels. This is Kids Health Cast by Weill Cornell Medicine. I’m Melanie Cole and today we’re talking about pediatric inflammatory bowel disease and COVID-19. Joining me is Dr. Robbyn Sockolow. She’s the Chief in the Division of Pediatric Gastroenterology and Nutrition and a Professor of Clinical Pediatrics at Weill Cornell Medicine. Dr. Sockolow, it’s a pleasure to have you join us today in these unprecedented times. We’re learning more about this virus every day. What do we currently know about the relative risk for inflammatory bowel disease patients regarding COVID-19, specifically children? Tell us about the risks for kids and other conditions who may be taking immunosuppressive drugs.
Robbyn Sockolow, MD (Guest): Good morning. Thank you for having me. So, what we do understand is as far as inflammatory bowel disease learning from our colleagues from around the world in all different countries is that overall, inflammatory bowel disease does not seem to give us an increased risk of having bad consequences for COVID-19. It’s not to say that this is not a disease or a condition that could put you at risk for other things but overall, as far as patients with inflammatory bowel disease, we do not seem to be seeing an increased risk of having a worse outcome as far as contracting it. what is really important though to understand is that most of the patients with inflammatory bowel disease tend to be young and what we’ve seen over the past few weeks is that overall patients who are younger seem to fair better with COVID-19.
Host: Well thank you for that encouraging answer Dr. Sockolow. It seems that respiratory symptoms represent the most common manifestations but what can you tell us about the gastrointestinal manifestations in patients with COVID-19? Do we know if it presents differently in children with IBD?
Dr. Sockolow: Well thank you for that question. So, in the very beginning, when we first started understanding some of the symptoms of COVID-19, we really thought it was mostly a respiratory illness. But as more and more patients are getting sick with COVID-19, and we’re beginning to see what it looks like in children, it may be that the first presentation could be GI symptoms such as vomiting, or diarrhea. And as the months have gone by, with us understanding this condition, we do know that sometimes it actually does present in the first few weeks or first few days as having vomiting, diarrhea and nausea. So, for children, although many of them seem to do quite well, even the signs of having some loose stools or vomiting, that may actually be the first presentation for COVID in children.
Host: Are you aware if the virus can spread through fecal oral transmission and if so, what are the steps for preventing that spread with children with IBD of course diarrhea can be a recurring issue. So, what do you want parents to know about cleanliness and transmission in that case?
Dr. Sockolow: Now as far as inflammatory bowel disease, we do know that most patients as they get older really understand their body quite well and we may be able to distinguish between a GI symptom that’s related to a flare or a GI symptom that now is different and so, it really becomes important for the family to really think about what these symptoms are and how they may just be common to what either their child or the patient who understands their body is common for their flare now versus something different. And so, it’s really important that you’re able to ask better questions, that you are able to tease out what these symptoms are about and most importantly if someone does have this regardless of whether it’s the parent or the child, that they really keep up with cleaning that bathroom well, washing their hands incredibly well and possibly if they have an opportunity to isolate that bathroom as the only one that that patient goes to.
Host: Well then along those lines, if they develop new onset digestive symptoms like diarrhea and they know their bodies like you say, they’ve been doing this a while; if they know that there’s been a possible exposure, should they be suspected for the illness?
Dr. Sockolow: Yes. We do know unfortunately, that COVID is really contagious in that sense and so if there’s a family member, had there been a contact and there’s any suspicion; my advice would be to call the office where your healthcare provider is and to discuss those symptoms to see whether they think it’s truly COVID or whether it may be related to their inflammatory bowel disease.
Host: Well I think one of the most important questions parents have Dr. Sockolow is should patients continue taking their medication especially immunosuppressants or prednisone? Should they continue their infusion protocol and if they are, do they still come in, what precautions are you taking? Speak about the whole medication and infusion situation that they may find themselves in.
Dr. Sockolow: Sure. So, the most important thing that we know again that the people who have inflammatory bowel disease tend to be on the younger side but what is really important is that the chances of you having a flare if you stop your medications is much higher than you having severe symptoms from COVID-19. So, again, it’s really critically important that if you are on medications for your inflammatory bowel disease, that you continue taking them. If there are any questions, please call your healthcare providers to discuss this. our colleagues from around the world have come together with a consensus report saying that overall that most of the medications that we take or that we prescribe for inflammatory bowel disease should be continued with the exceptions really of prednisone.
So, if either you or your child is on high dose prednisone, it’s really important to speak with your healthcare provider about potentially decreasing the prednisone dose that they are on or being able to at least bring it down to the lowest possible dose so that your IBD is controlled but that you’re not at greater risk for having an increased infection from the prednisone itself. So, again, having that discussion with your healthcare provider is incredibly important. You can do it nowadays on Tele visits, you can do it by telephone, you can do it by your portal system, but I really urge the parents of children with inflammatory bowel disease to have this detailed discussion. Each and every patient is different. Each and every scenario is different. And having that unique conversation with the person who knows your child’s health well is incredibly important.
On that note too, it’s also something that you should think about that although the pharmaceutical manufacturers are making their medications, regardless whether it’s an oral medication an injection or intravenous, that as far as the oral medications that you make sure that you have enough of that at home. There are many delivery services that can bring it to your home. There are mail delivery services that can give you a three month supply. So, I urge families to not only look at your child’s medication but also to look at your own individual needs as far as medications and make sure that you have plenty of the supply.
Now just speaking a little bit about infusions, again, going back to the first comment that I made, that the most important thing that you need to do is to keep your inflammatory bowel disease under good control. So, if you are on infusion of any of the biologic medications; it’s incredibly important that you keep up with that as far as your intervals of when you’re getting that and there are places both hospital infusions and infusion centers where they are taking extra precautions by interviewing the family or the child ahead of time to make sure that they’ve been feeling well, that there have been no fevers et cetera. They are taking obviously extra precautions about cleaning the space as you can imagine. There are many chemotherapeutic agents that are being given to patients with cancer. So, these centers are very, very sensitive about making sure that whoever comes in is healthy and in that regard, it’s also quite important that if you are bringing your child to an infusion center, either the hospital or an ambulatory, that you are well, that it’s only you that brings your child and that it shouldn’t be a family bringing their entire family to the infusion center or certainly anyone who might not be feeling well.
Now as far as infusions that are happening in the home; that too is another place where again, making sure that people around you are healthy, this is a great opportunity if you haven’t discussed this with healthcare providers and if your insurance allows this, this may be an option but remember that there is an administrative process of being able to get that in place. But again, the patient should be not having fevers, or anything that would tell you that there are symptoms that might be related to COVID, the family around them also. And even just making sure that the people who come to your home which are the nurses that administer these infusions are also healthy. And this has been going on with many, many of the infusion companies making sure that they can deliver this to families and patients and that their healthcare staff meaning nurses even pharmacists are also staying healthy to be able to deliver these services to families.
Host: Well thank you for that very comprehensive answer. Dr. Sockolow speak about your team specifically, how you are evolving care for your patients. Talk a little bit about how your department is utilizing Telemedicine, as you mentioned briefly before and what extra precautions, you’re advising your patients to take and your team to take. Tell us a little bit about what you’re doing there.
Dr. Sockolow: So, the way that our office practice has changed dramatically has been the use of Tele visits. Now we have been using Tele visits in the past for various ways of communicating with our patients but not necessarily doing a “full visit.” In the advent of what’s been happening over the past few weeks, we understood immediately that our patients still needed to have a connection to us and that we needed to be able to communicate with them and at least deliver some medical care and advice to them in the safest way and we took this Tele visit ability that we had and we really expanded it to now just doing full visits. Now obviously we can’t do a full physical exam and there are some abilities that are compromised because of it. We still love to see our patients face to face but clearly for the safety of families and frankly the healthcare force of making sure there wasn’t increased traffic, we really expanded our Tele visit capabilities to families.
So, our families call, we do as much of a visit as possible, ask their height and their weight. We ask the usual questions, the medications that they are on but one of the things we think is critically important is really the advice.
So again, as we mentioned before, that each patient is different and the advice that we give is unique and therefore, having the full chart open, knowing who that patient is, what medications they are on, understanding what the family dynamics and family histories are, we are then able to deliver more comprehensive and accurate and unique advice to each and every patient. And so by doing this, we think that one of the most important things we can do to contribute to all of this is to make sure that we keep our patients healthy so that they are doing well with their IBD and that they don’t need to go to an emergency room and certainly not be hospitalized. And so Tele visits have really become 100% if you will of the way that we are currently delivering care. And if a patient should not feel well, and after that discussion, not doing well then at that point, it would seem appropriate that we then advise them to go to their closest emergency room if there’s something that we’re very, very concerned about or to one of the EDs to where we could potentially speak with the emergency room doctor and give our advice about what type of labs or imaging or anything else that seems appropriate at the time.
Host: Just to reiterate, Doctor, if a parent is fearful that their child is sick or is exhibiting these symptoms, do they call their pediatrician, urgent care or do they go right to their GI specialist.
Dr. Sockolow: So, it’s sometimes a difficult question but for the most part, with IBD, we seem to see these patients much more frequently than what their general practitioner does and so therefore, perhaps that first phone call should be to us because we’ll be able to decipher whether this is truly GI related or whether it’s respiratory or not. We also know the medications that they are on, we know the risks of them. So, it would be my advice to at least touch base with your GI provider first and then depending on that conversation, then it might go to a pediatrician or other healthcare provider. I would really urge that if there’s nothing that is severe going on to first make those phone calls and then obviously get the right advice about what the next steps should be.
Host: This is such an informative episode Dr. Sockolow, before we wrap up, what about the stress we are all feeling? There seems to be a worldwide stress but specifically for parents and kids that have autoimmune diseases or inflammatory bowel diseases. What are some things you want patents to know or to try with their kids so that they can help to reduce the stress that everybody is feeling while we’re isolated and in quarantine and worried about kids that have chronic conditions?
Dr. Sockolow: Well thank you so much for that question. Because it always seems that the mental health aspect of many conditions don’t seem to get the highlighting that they really need to have. So, yes, these are really unprecedented times where everyone is at home, the natural behaviors of us going outside or going to supermarket of going to any place where there are crowds is now not an option, the most important thing is that we stay at home, so we stop the spread. So, here we are having kids at home, they are not in their usual playdates and going to school. Parents are at home having to homeschool them. And the TV may be on or it may be that the fears that are going on within the family is now part of every body’s normal experience. So, it’s never too forget that we have to stay as calm as possible, that we have to reassure our kids that we’re here for them, we’re going to take care of them, we’re going to protect them, that it’s so important that we make sure that we wash our hands, that we do things like turn the TV off frankly because that can be frightening if you are listening to it day in and day out. It’s really to do the things that make us happy. It’s taking out those old board games that now often just sit in the toy closets. It’s playing Scrabble, it’s learning how to do the jigsaw puzzle. It’s maybe just watching a movie that’s fun and uplifting. Because these can be scary times and it’s so important that we as parents, we as parent of children who have chronic illnesses to make sure that the children feel that they are safe, that they are going to be protected and that we’re going to get through this and we’re going to get through this and we may have a little different way that we look at life in the future. But everything will ultimately turn out okay if we stick together and that we are making sure that our kids are staying safe.
Host: Excellent summary and wrap up Dr. Sockolow, thank you so much for joining us today and really sharing your incredible expertise. For information about COVID-19 including symptoms, prevention and travel advice, please visit www.weillcornell.org/coronavirus. Or you can call our hotline at 646-697-4000. That concludes today’s episode of Kids Health Cast. Please remember to subscribe, rate and review this podcast and all the other Weill Cornell Medicine podcasts. Share this show with your friends and family, people that you know that may have children with IBD. That way we’re learning from the experts at Weill Cornell Medicine together. I’m Melanie Cole.
COVID-19 & Pediatric IBD: Special Guidance for Families
Melanie Cole (Host): This is the Weill Cornell Medicine Kids Health podcast on COVID-19 dated April 6, 2020.
There’s no handbook for your child’s health, but we do have a podcast featuring worldclass clinical and research physicians covering everything from your child’s allergies to zinc levels. This is Kids Health Cast by Weill Cornell Medicine. I’m Melanie Cole and today we’re talking about pediatric inflammatory bowel disease and COVID-19. Joining me is Dr. Robbyn Sockolow. She’s the Chief in the Division of Pediatric Gastroenterology and Nutrition and a Professor of Clinical Pediatrics at Weill Cornell Medicine. Dr. Sockolow, it’s a pleasure to have you join us today in these unprecedented times. We’re learning more about this virus every day. What do we currently know about the relative risk for inflammatory bowel disease patients regarding COVID-19, specifically children? Tell us about the risks for kids and other conditions who may be taking immunosuppressive drugs.
Robbyn Sockolow, MD (Guest): Good morning. Thank you for having me. So, what we do understand is as far as inflammatory bowel disease learning from our colleagues from around the world in all different countries is that overall, inflammatory bowel disease does not seem to give us an increased risk of having bad consequences for COVID-19. It’s not to say that this is not a disease or a condition that could put you at risk for other things but overall, as far as patients with inflammatory bowel disease, we do not seem to be seeing an increased risk of having a worse outcome as far as contracting it. what is really important though to understand is that most of the patients with inflammatory bowel disease tend to be young and what we’ve seen over the past few weeks is that overall patients who are younger seem to fair better with COVID-19.
Host: Well thank you for that encouraging answer Dr. Sockolow. It seems that respiratory symptoms represent the most common manifestations but what can you tell us about the gastrointestinal manifestations in patients with COVID-19? Do we know if it presents differently in children with IBD?
Dr. Sockolow: Well thank you for that question. So, in the very beginning, when we first started understanding some of the symptoms of COVID-19, we really thought it was mostly a respiratory illness. But as more and more patients are getting sick with COVID-19, and we’re beginning to see what it looks like in children, it may be that the first presentation could be GI symptoms such as vomiting, or diarrhea. And as the months have gone by, with us understanding this condition, we do know that sometimes it actually does present in the first few weeks or first few days as having vomiting, diarrhea and nausea. So, for children, although many of them seem to do quite well, even the signs of having some loose stools or vomiting, that may actually be the first presentation for COVID in children.
Host: Are you aware if the virus can spread through fecal oral transmission and if so, what are the steps for preventing that spread with children with IBD of course diarrhea can be a recurring issue. So, what do you want parents to know about cleanliness and transmission in that case?
Dr. Sockolow: Now as far as inflammatory bowel disease, we do know that most patients as they get older really understand their body quite well and we may be able to distinguish between a GI symptom that’s related to a flare or a GI symptom that now is different and so, it really becomes important for the family to really think about what these symptoms are and how they may just be common to what either their child or the patient who understands their body is common for their flare now versus something different. And so, it’s really important that you’re able to ask better questions, that you are able to tease out what these symptoms are about and most importantly if someone does have this regardless of whether it’s the parent or the child, that they really keep up with cleaning that bathroom well, washing their hands incredibly well and possibly if they have an opportunity to isolate that bathroom as the only one that that patient goes to.
Host: Well then along those lines, if they develop new onset digestive symptoms like diarrhea and they know their bodies like you say, they’ve been doing this a while; if they know that there’s been a possible exposure, should they be suspected for the illness?
Dr. Sockolow: Yes. We do know unfortunately, that COVID is really contagious in that sense and so if there’s a family member, had there been a contact and there’s any suspicion; my advice would be to call the office where your healthcare provider is and to discuss those symptoms to see whether they think it’s truly COVID or whether it may be related to their inflammatory bowel disease.
Host: Well I think one of the most important questions parents have Dr. Sockolow is should patients continue taking their medication especially immunosuppressants or prednisone? Should they continue their infusion protocol and if they are, do they still come in, what precautions are you taking? Speak about the whole medication and infusion situation that they may find themselves in.
Dr. Sockolow: Sure. So, the most important thing that we know again that the people who have inflammatory bowel disease tend to be on the younger side but what is really important is that the chances of you having a flare if you stop your medications is much higher than you having severe symptoms from COVID-19. So, again, it’s really critically important that if you are on medications for your inflammatory bowel disease, that you continue taking them. If there are any questions, please call your healthcare providers to discuss this. our colleagues from around the world have come together with a consensus report saying that overall that most of the medications that we take or that we prescribe for inflammatory bowel disease should be continued with the exceptions really of prednisone.
So, if either you or your child is on high dose prednisone, it’s really important to speak with your healthcare provider about potentially decreasing the prednisone dose that they are on or being able to at least bring it down to the lowest possible dose so that your IBD is controlled but that you’re not at greater risk for having an increased infection from the prednisone itself. So, again, having that discussion with your healthcare provider is incredibly important. You can do it nowadays on Tele visits, you can do it by telephone, you can do it by your portal system, but I really urge the parents of children with inflammatory bowel disease to have this detailed discussion. Each and every patient is different. Each and every scenario is different. And having that unique conversation with the person who knows your child’s health well is incredibly important.
On that note too, it’s also something that you should think about that although the pharmaceutical manufacturers are making their medications, regardless whether it’s an oral medication an injection or intravenous, that as far as the oral medications that you make sure that you have enough of that at home. There are many delivery services that can bring it to your home. There are mail delivery services that can give you a three month supply. So, I urge families to not only look at your child’s medication but also to look at your own individual needs as far as medications and make sure that you have plenty of the supply.
Now just speaking a little bit about infusions, again, going back to the first comment that I made, that the most important thing that you need to do is to keep your inflammatory bowel disease under good control. So, if you are on infusion of any of the biologic medications; it’s incredibly important that you keep up with that as far as your intervals of when you’re getting that and there are places both hospital infusions and infusion centers where they are taking extra precautions by interviewing the family or the child ahead of time to make sure that they’ve been feeling well, that there have been no fevers et cetera. They are taking obviously extra precautions about cleaning the space as you can imagine. There are many chemotherapeutic agents that are being given to patients with cancer. So, these centers are very, very sensitive about making sure that whoever comes in is healthy and in that regard, it’s also quite important that if you are bringing your child to an infusion center, either the hospital or an ambulatory, that you are well, that it’s only you that brings your child and that it shouldn’t be a family bringing their entire family to the infusion center or certainly anyone who might not be feeling well.
Now as far as infusions that are happening in the home; that too is another place where again, making sure that people around you are healthy, this is a great opportunity if you haven’t discussed this with healthcare providers and if your insurance allows this, this may be an option but remember that there is an administrative process of being able to get that in place. But again, the patient should be not having fevers, or anything that would tell you that there are symptoms that might be related to COVID, the family around them also. And even just making sure that the people who come to your home which are the nurses that administer these infusions are also healthy. And this has been going on with many, many of the infusion companies making sure that they can deliver this to families and patients and that their healthcare staff meaning nurses even pharmacists are also staying healthy to be able to deliver these services to families.
Host: Well thank you for that very comprehensive answer. Dr. Sockolow speak about your team specifically, how you are evolving care for your patients. Talk a little bit about how your department is utilizing Telemedicine, as you mentioned briefly before and what extra precautions, you’re advising your patients to take and your team to take. Tell us a little bit about what you’re doing there.
Dr. Sockolow: So, the way that our office practice has changed dramatically has been the use of Tele visits. Now we have been using Tele visits in the past for various ways of communicating with our patients but not necessarily doing a “full visit.” In the advent of what’s been happening over the past few weeks, we understood immediately that our patients still needed to have a connection to us and that we needed to be able to communicate with them and at least deliver some medical care and advice to them in the safest way and we took this Tele visit ability that we had and we really expanded it to now just doing full visits. Now obviously we can’t do a full physical exam and there are some abilities that are compromised because of it. We still love to see our patients face to face but clearly for the safety of families and frankly the healthcare force of making sure there wasn’t increased traffic, we really expanded our Tele visit capabilities to families.
So, our families call, we do as much of a visit as possible, ask their height and their weight. We ask the usual questions, the medications that they are on but one of the things we think is critically important is really the advice.
So again, as we mentioned before, that each patient is different and the advice that we give is unique and therefore, having the full chart open, knowing who that patient is, what medications they are on, understanding what the family dynamics and family histories are, we are then able to deliver more comprehensive and accurate and unique advice to each and every patient. And so by doing this, we think that one of the most important things we can do to contribute to all of this is to make sure that we keep our patients healthy so that they are doing well with their IBD and that they don’t need to go to an emergency room and certainly not be hospitalized. And so Tele visits have really become 100% if you will of the way that we are currently delivering care. And if a patient should not feel well, and after that discussion, not doing well then at that point, it would seem appropriate that we then advise them to go to their closest emergency room if there’s something that we’re very, very concerned about or to one of the EDs to where we could potentially speak with the emergency room doctor and give our advice about what type of labs or imaging or anything else that seems appropriate at the time.
Host: Just to reiterate, Doctor, if a parent is fearful that their child is sick or is exhibiting these symptoms, do they call their pediatrician, urgent care or do they go right to their GI specialist.
Dr. Sockolow: So, it’s sometimes a difficult question but for the most part, with IBD, we seem to see these patients much more frequently than what their general practitioner does and so therefore, perhaps that first phone call should be to us because we’ll be able to decipher whether this is truly GI related or whether it’s respiratory or not. We also know the medications that they are on, we know the risks of them. So, it would be my advice to at least touch base with your GI provider first and then depending on that conversation, then it might go to a pediatrician or other healthcare provider. I would really urge that if there’s nothing that is severe going on to first make those phone calls and then obviously get the right advice about what the next steps should be.
Host: This is such an informative episode Dr. Sockolow, before we wrap up, what about the stress we are all feeling? There seems to be a worldwide stress but specifically for parents and kids that have autoimmune diseases or inflammatory bowel diseases. What are some things you want patents to know or to try with their kids so that they can help to reduce the stress that everybody is feeling while we’re isolated and in quarantine and worried about kids that have chronic conditions?
Dr. Sockolow: Well thank you so much for that question. Because it always seems that the mental health aspect of many conditions don’t seem to get the highlighting that they really need to have. So, yes, these are really unprecedented times where everyone is at home, the natural behaviors of us going outside or going to supermarket of going to any place where there are crowds is now not an option, the most important thing is that we stay at home, so we stop the spread. So, here we are having kids at home, they are not in their usual playdates and going to school. Parents are at home having to homeschool them. And the TV may be on or it may be that the fears that are going on within the family is now part of every body’s normal experience. So, it’s never too forget that we have to stay as calm as possible, that we have to reassure our kids that we’re here for them, we’re going to take care of them, we’re going to protect them, that it’s so important that we make sure that we wash our hands, that we do things like turn the TV off frankly because that can be frightening if you are listening to it day in and day out. It’s really to do the things that make us happy. It’s taking out those old board games that now often just sit in the toy closets. It’s playing Scrabble, it’s learning how to do the jigsaw puzzle. It’s maybe just watching a movie that’s fun and uplifting. Because these can be scary times and it’s so important that we as parents, we as parent of children who have chronic illnesses to make sure that the children feel that they are safe, that they are going to be protected and that we’re going to get through this and we’re going to get through this and we may have a little different way that we look at life in the future. But everything will ultimately turn out okay if we stick together and that we are making sure that our kids are staying safe.
Host: Excellent summary and wrap up Dr. Sockolow, thank you so much for joining us today and really sharing your incredible expertise. For information about COVID-19 including symptoms, prevention and travel advice, please visit www.weillcornell.org/coronavirus. Or you can call our hotline at 646-697-4000. That concludes today’s episode of Kids Health Cast. Please remember to subscribe, rate and review this podcast and all the other Weill Cornell Medicine podcasts. Share this show with your friends and family, people that you know that may have children with IBD. That way we’re learning from the experts at Weill Cornell Medicine together. I’m Melanie Cole.