Long Covid in Children: What Parents Need to Know

Welcome to Where Parents Talk. My name is Lianne Castelino. Our guest today is a pediatrician and a clinical researcher. Dr.

Rachel Gross is an associate professor of pediatrics at New York University Grossman School of Medicine.

She's one of the authors of a study published in the Journal of the American Medical association that examined long Covid symptoms most commonly found in children and teens. Dr. Gross is also a mother of two teens herself, and she joins us today from New York City. Thank you so much for taking the time.

Thank you so much for having me today.

Such a large topic and maybe on the back burner for many of us who want to forget about COVID But the fact of the matter is that long Covid remains an issue for millions of people in the US as well as Canada. Why are children and teens in particular considered a wider, widely understudied group when it comes to long Covid symptoms?

Yeah, thank you so much for asking that question, because I think it really stems from several common misperceptions about COVID and children. And these date back all the way from the beginning of the pandemic.

Some of the early misperceptions were that children didn't get COVID infections, or if they did get COVID infections, they didn't experience a lot of symptoms or didn't get sick from it. And we know now that that is not true. And then that led to other common misperceptions that children didn't get long Covid.

And we know now from our study and many others that that is not true. And then the third misperception that we see is that if children get long Covid, it must look like long Covid in adults.

And we know from the findings that we recently pub. That also is not true.

Lots to unpack there. But maybe we should back up a little bit and paint sort of a larger picture of what we're talking about here.

The latest statistics show that about 18 million Americans and just over 2 million Canadians are dealing and grappling with long Covid symptoms. The RECOVER Initiative, of which you are a part, was created to address that very issue. Can you tell us a little bit about the RECOVER initiative?

First of all, in and of itself, yes.

So RECOVER stands for Research in Covid to Enhance Recovery.

And it is a large NIH funded national initiative in the United States to really understand the long term effects of COVID and really to do substantial, comprehensive research to understand long Covid across the entire lifespan.

And so by lifespan, I mean, you know, all the way from studying pregnant people and the effects on their babies to studying children of all ages and all the way through adulthood. And we to date, have enrolled across the whole lifespan, you know, up to 30,000 participants into the RECOVER study.

And we have hundreds of researchers, hundreds of sites around the country, and many families and caregivers and patients that are all also involved in the RECOVER initiative.

With that backdrop set, then, can you tell us what the impetus for this particular study that we're talking about as it relates to kids and teens? What was the impetus for that study?

Yeah, so just even taking a step back, when we say we're studying long Covid, many people don't even know really what we mean by that.

And so when we're talking about long Covid, we're talking about the prolonged symptoms or new conditions that occur long after an initial COVID infection resolves. And in some people, children, adults, these symptoms can last weeks, months, or even years after the COVID infection resolves.

And they can have debilitating effects. And so, unfortunately, most of what we know about long Covid we've learned from studies of adults.

And it's so critically important to have studies that focus specifically on children, because as a general pediatrician, we know that children are not just little adults, that they are growing and developing, and they are unique throughout their growth in childhood. And so we really need to understand specifically what long Covid looks like in children.

Can you take us through some of the key findings of the study?

Yeah.

So this is one of the first studies to really look at what and characterize what are the prolonged symptoms that children are experiencing after their COVID infection. And we looked at it in two different age groups.

We looked at school age children who are between 6 and 11 years old, and we looked at adolescents or teenagers who were between 12 and 17. And what we found was children across both ages were experiencing prolonged symptoms in almost every organ system of the body.

But when we look at the specific symptoms, while there are similarities across age groups and similarities with symptoms experienced by adults, we do see distinguishable differences, making each age group somewhat unique.

Can you take us through some of those main symptoms that you uncovered?

Yes. So in both of the age groups, we do see symptoms that affect almost every organ system of the body.

So some of the most common symptoms include those that affect kind of the general well being of a child.

So it may result in being overly sleepy or tired, or having very low energy, may result in change in their fatigue and well being may change their concentration and thinking and memory.

We also see specific symptoms related to pain, such as headache or pain in the neck, back or other general muscles and joints, as well as symptoms that affect the stomach, such as stomach pain or nausea and vomiting.

So it's interesting because that list of symptoms could, it sounds like it could be any number of things. If you're a parent and not a medical professional. And you know, at the outset of the interview, you talked about the common misperceptions.

So when you kind of put those two concepts together and you're a parent, you know, there's, there's a, there's the ability not to be able to see this as a potential long Covid issue that you need to deal with. So what should a parent be potentially looking out for?

Yeah, so when we talk about these prolonged symptoms, they're not symptoms that happen, you know, just for a few days and then they completely resolve. What we are looking for and talking about are prolonged symptoms that are there for, you know, at least four weeks.

Some of the newer definitions really talk about these symptoms lasting for at least three months after an initial infection. But many people have these symptoms, as I said, for much longer than those three months.

And the symptoms can come and go, they can persist, or they can come and go in that you don't have to have them all the time, but they may, you know, have them for some time, go away and then come back.

So for parents, if they begin to notice that there are symptoms that are changing after having had a COVID infection that are lasting quite a long time, you know, it's always good to speak to your pediatrician or child's health care clinician to really think about why these symptoms might be persisting and to think that could they be related to a COVID infection in the past, if you.

Were going to try to explain the key differences between symptoms in children and symptoms in adults, how would you go about explaining that?

Yeah. So, you know, one of the things we did in this paper was we started to look at different types of groupings of symptoms that come together.

Because the one thing that's so unique about long Covid is that it looks different in different people. And so while there are symptoms that can occur in every organ system of the body, not everyone has all of those symptoms.

And so there may be different types of long Covid that we're seeing.

And in our study, we found that there were four different types of long Covid that we were seeing in school age children and three different types of long Covid that we were seeing in teenagers. And some of these different types are similar to the Ones we see in adults, and some of them are not.

And so the two that we see in both of the age groups that are also common in adults include, the first one being one where children or adults are experiencing symptoms in almost every organ system of their body. So in many organ systems with many different symptoms. And so that is a common type of long Covid that we see across all of these ages.

And those are the children and adults with the greatest symptom burden.

Then another type of long Covid that we see is one where the most prominent symptoms are related to having pain in the body and related to being very tired. And those are types of long Covid we also see in both the school age children, adolescents, as well as many adults in the school age group.

We saw two additional ones that were unique to that group.

One was when the symptoms that were most predominant were related to changes and having trouble with sleep, as well as changes in thinking and memory and concentration. And then another type where the primary symptoms really were stomach pain, nausea and vomiting.

And so those two different types we saw, you know, very uniquely in this younger age group. Then in the teenager. Oh, I'm sorry, go ahead.

And finally, just in the teenagers, we see a unique group where their primary symptom is having a change in their smell and taste. And many adults also experience that. So that particular type we see in the teenagers as well as in adults, but not described, you know, in that way.

For the school age children, if long.

Covid symptoms manifest in a child or in a teen, is there a timeline within which that could begin after they contract the infection, the virus?

Yeah.

So it varies so much in that some children can have their symptoms that they had during their acute infection, like during their infection that just last and do not go away over time, so they, their early symptoms persist, but other children can even have their early infection and have that resolved, and then new symptoms begin even months later. And so we see both presentations related to long Covid.

Is there anything in the findings of the study, Dr.

Gross, that struck you in particular as a pediatrician wading into this whole new world of trying to figure out Covid and you know, what it means in terms of, of this age group, but also with respect to long Covid symptoms? Anything surprise you?

I don't think it surprised me, but I think one of the most important things that we found were these differences across age groups, because I worry a lot that we are missing children and misdiagnosing children, especially in these younger age groups, because the symptoms that they may be experiencing are different from the symptoms of the older children or of adults.

And so, you know, as we mentioned earlier, even some symptoms that we commonly see related to other conditions in children, so prolonged headaches or stomach problems, pain, nausea and vomiting, they can be associated with many other things.

And so I think what's so important about our findings is that it really highlights that even these common symptoms that we see in children may be related to long Covid.

And it's important to include that in our thinking when we're trying to understand why a child is experiencing these symptoms and why they're feeling so sick.

With respect to the study and its findings, it is not intended to be used as a clinical tool today as we speak. However, how would you characterize the short term, the medium term, and the long term impact of the findings of this study?

Yeah, so we, you know, developed a tool to be able to identify the symptoms that are most predictive at identifying children who may have long Covid. And these groups of symptoms together also help identify children that experience many other symptoms.

And while they're are being used primarily for research currently so that we can identify children with long Covid and follow them over time so that we can study how these symptoms change over time, how they come and go and understand why they're happening. We do anticipate that we might learn more as the research continues and be able to build on this research and to adapt future tools for screening.

And so they really lay the foundation and the start for developing clinical tools in the future. But more research is needed to make sure that as we learn more about long Covid, we are creating a tool.

That works most effectively when you encounter parents.

And for parents listening to or watching this interview, you know, listening to those potential symptoms, wondering, you know, if their child may fall into that category with the prolonged symptoms as well. Like, what would you suggest is an optimal time in terms of being proactive as a parent for them to take their child to seek medical help?

Yeah.

So, you know, if a parent is concerned that they've noticed changes in their child, whether it's new physical symptoms, whether it's changes in their behavior or their changes at school, or they're having some of these really severe debilitations, debilitating effects, they should definitely speak to their doctor, pediatrician, healthcare team. Many clinicians will start to meet some of the definitions of long Covid if these symptoms have been lasting for more than three months.

But even if the symptoms are lasting less than that, and they're really affecting how the child is doing Speaking to your doctor is really the first step.

With that, that with respect to the doctor and the primary care physician, is that the best place to go or should it be a specialist at some point? I don't know.

In terms of if everybody's got access to a pediatrician or a primary care physician, that tends to be different, depending on the individual. What would be your suggestion as to where to seek medical assistance as a first step?

Yeah, one of the challenges that we're facing is that many healthcare clinicians are not as familiar with long Covid because the research is developing. And so we hope that studies like ours really work to raise awareness that children do get long Covid.

They can get long Covid and that their symptoms may not look the same as it does in other age groups or in adults. And so really to raise that awareness, a primary pediatrician is always a good place to start.

But if you feel that your pediatrician or healthcare clinician doesn't have the experience or knowledge about long Covid, I really encourage families to seek other opinions, to seek out experts in their area who may be more knowledgeable about long Covid.

So sometimes families live close to a center that has a long Covid clinic specifically, but I know there are very few of these and many families are not near those facilities. So asking around, working with community organizations, advocacy groups related to long Covid to help find the experts in your local.

Area we've talked about, the focus of the study was, which was about the symptoms piece, but I wonder if we could pivot a bit over to treatment. What do treatment options look like for each of the cohorts, you know, children as well as teens, with respect to long Covid?

Yeah.

So the ultimate goal of, you know, why we're doing these studies that we're doing to study symptoms, to identify underlying mechanisms and targets for treatment so that we can develop treatments specifically for children. Because what we learn through this study is that it's likely not going to be a one size fits all that.

We need to understand why is long Covid looking different in school age children, why is it looking different in teenagers? And what kind of treatments can be developed to help specifically to alleviate the symptoms that are being felt as, as well as the underlying causes.

Unfortunately, at this current time, there is very little research on treatments of long Covid and particularly very little research on treatments specific to children. So different physicians are trying different, more symptom related therapies.

And that is sort of of the type of relief that many of the children are getting right now. And so we desperately need more research to really identify what these treatments are and move towards clinical trials for children.

You've talked about the marked differences with respect to long Covid symptoms in children versus adults.

I wonder, with the research that's been conducted on adults, is there anything there that can support the research that is, you know, now happening and ongoing and into the future as it relates to kids and teens?

Yeah, so I think, you know, as we learn about why long Covid is happening in adults, what are the underlying mechanisms, I think the next steps are to also explore those mechanisms in children so that we can know are similar processes happening. But then we also need to explore things that are unique to children to make sure that we understand what's happening.

So you know why we're seeing these differences in children? We don't know yet. It could be diff. It could be related to differences in their immune systems at different ages.

It could be related to changes in hormones related to puberty as children move into adolescence.

And so, you know, many of the studies coming out of the RECOVER initiative in the future, we'll focus on those types of mechanisms to really begin to identify therapeutic targets specific for children.

When we talk about symptoms of long Covid in kids and teens, could you take us through what the long term effects potentially could be if these symptoms are overlooked, ignored, or not properly treated?

It. Yeah. So we know that childhood is such an important time in any child's life and they're growing and they're developing.

And so when long Covid symptoms are missed, it can change the way the body is growing, it can change the way the brain is developing. And we know that there are severe effects in a child's quality of life.

Their ability to participate in family activity, ability to interact with their friends, ability to go to school and to learn the most effective way.

And so we need to support children and families so that they can continue to interact with school in a way that works for them, given all that they're going through.

Because if we don't support child's growth and development during these critical times, we know that that child's health greatly affects their, the adults that they can become. And we may see effects on development through throughout their lifespan.

You mentioned school. And so many of these symptoms can certainly manifest during the day when kids are not, you know, in their parents care.

What would you say then to educators about some of what this study has found that maybe, you know, they might need to know about as well, caregivers as it were during the day for, you know, Young children and teens?

Yeah, I think it goes back to that awareness that I mentioned.

For families and health care providers, it is equally important for educators and teachers and schools to know that long Covid in children is not rare. It's not a rare condition, and it's a very real condition that children are experiencing.

And so when they see children, children in their classrooms who have changed the way they're interacting with school, that they're having trouble going to school, that they're having trouble with doing homework, they're having trouble learning, that these changes are very real and that these children need support.

Anything else that you think, Dr. Gross, that parents really need to be mindful of?

Of parents whose children may have had COVID 19, what do they need to be mindful of potentially as it relates to long Covid symptoms?

Yeah, I mean, I think unfortunately, since we don't have any known treatments at this time, one of the things that we recommend and what parents can do is at this time, the only way to really prevent long Covid from happening is to try to limit getting a COVID infection to begin with. And that may be getting repeated COVID infections over time, since we know so many children have already had Covid.

But as they continue to live in the environment, they may get repeated COVID infections. So the only way to limit is to try to prevent those infections either through wearing masks or through vaccination.

Where would you as a pediatrician, like to see the next phase of this study go?

Yeah, so one of the next things we are doing is to look even earlier in life. So we are starting to look at what does long Covid look like in early childhood.

So what does it look like for an infant, a toddler, a preschool age child? And so that's one of our next steps. And then in addition to try to understand why do some children get long Covid and others do not?

So what are some of the things that lead a child to be more likely to have these prolonged symptoms? And then what are the underlying mechanisms, as I mentioned, so that we can, you know, desperately develop the treatments that children need?

Speaking of those treatments, you talked about how key these studies, how integral these studies are to one day have those treatments. Is there any way to predict how far away we may be from, you know, foolproof treatment options to deal with long Covid in children?

I know there is a lot of active work and attention turning to clinical trials. And so there are many clinical trials taking place in adults and many more to come.

I am optimistic that clinical trials trials will begin in children, but we really need to advocate for those to occur as soon as possible.

So to include children in studies that include adults if it's appropriate for a child and for the child's age, as well as having trials that are specific for children.

Lots of incredibly important information. Dr. Rachel Gross, pediatrician and clinical researcher, talking about long Covid symptoms, symptoms in kids and teens.

Thank you so much for your time and your insight today.

Thank you so much for having me.