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COVID Kid Long Haulers: Specialized Treatment Needed – In-Depth Doctor’s Interview

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Katherine Clouser, MD, medical director of Pediatric COVID Recovery Center at Joseph M. Sanzari Children’s Hospital, talks about how adults are not the only ones having a hard time recovering after COVID.

I wanted to start there. When you hear about COVID and kids, is – does this illness impact them in the same way it does adults? Are we seeing the same signs and symptoms?

DR CLOUSER: The symptoms initially started a little bit different. So back in 2020 in March, April and May, we were seeing a lot more of the gastrointestinal side effects. They were having a lot of diarrhea, a lot of vomiting, a lot of abdominal pain. Then around that same time, they started to develop this multisystem inflammatory syndrome. So, they were getting a lot more of the post-infectious symptoms as opposed to adults who were having the acute symptoms. As time went on, that changed a little bit, and children starting last fall really started to show more of the respiratory symptoms. It wasn’t all related to the variants. As the variants have become more prevalent in the community, kids have been getting more sick. So initially, they were kind of spared the really severe illnesses needing the ICU-level care and needing a lot of hospitalization. But particularly over the summer, we saw a sharp increase in children. Part of that is the variant. The Delta variant seemed to make kids a little bit more sick, but it also makes sense because we were vaccinating adults. So, the shift in the population, adults were protected. Children were not, and they became more sick.

What are we seeing right now, fall winter of 2021 going into twenty two?

DR CLOUSER: Same similar kind of things to adults. Kids are who are getting COVID who need hospitalization or having very similar symptoms to adults where it’s difficulty breathing, needing oxygen, kind of symptoms like that. It’s not as prevalent in children as in adults. That’s stayed true, and children are not dying at the same rate as adults, which is a really good thing. It is, you know, impacting their school. A lot of schools are having times where they need to quarantine a class or keep kids at home because they are sick. So, it is impacting their day-to-day lives. They’re just not getting as sick as adults are.

Can you run down just a quick list – like a laundry list of symptoms that kids are experiencing from COVID?

DR CLOUSER: Sure. So, when they get acute COVID, they’re having, which is that first initial infection where they’re actually having the symptoms of the illness itself, they’ll present with fever, headaches, cough, difficulty breathing, fatigue, meaning that they’re really, really tired, right? Kids take naps, but it’s one of those naps that they won’t wake up from. They’re still having difficulty eating, vomiting, diarrhea. Kind of similar symptoms to what they would normally have with the flu we’ll say. Very similar to that is what kids are having.

In terms of treatment, are kids like little adults? Can you treat them in the same way that we treat adults?

DR CLOUSER: We were really lucky when kids started to get sick that we kind of had the adults to learn from. So, all of the things that we did wrong in the first part of this pandemic, we didn’t do with kids. We were you know able to keep them off of the ventilators. We are using very similar treatments. So, kids who need oxygen will get steroids. That’s a mainstay of treatment in both children and adults. There’s some antiviral medications that are also helping in the initial phase of illness. So, they are little adults, but we’re using much smaller doses, and we are a little bit less aggressive with their oxygen as well.

Let’s talk about what you’re studying here. First of all, long haulers. You’re studying, we’ve heard the term. We’ve seen it in adults, but you’re also seeing those long-range effects on kids.

DR CLOUSER: Yes. So, most places started to see this around January, February. There were kids who had been infected in you know October, November of 2020 who started to kind of to complain that maybe they couldn’t focus in the same way. They were a little more tired. Where they used to play on their soccer team, they weren’t able to do that so much anymore. So, we started to kind of notice that phenomenon, and we opened the center here in April where we were able to see kids in a multidisciplinary way, meaning that we’ve got a lot of different specialists who can see kids on the same day to kind of address their needs. It’s tailored to the child themselves. What we’re mainly seeing is kids who used to be really good in school, who are now struggling in school, kids who have trouble sleeping, who can’t stay awake, or that athlete who’s really having a hard time kind of returning to their level of activity post the infection.

What do we do for these kids?

DR CLOUSER: A lot of it is supportive care, which I know is kind of a blanket term that lots of people have been hearing in the last couple of weeks. What that means is that we’re doing things that help them to regain their stamina. So, if they’ve got headaches, chronic headaches, we may need to put them on migraine medication. We’ll work with a neurologist to do that. If they’re having a hard time getting back to their level of activity because they’re having a difficult time breathing, we’ll do lung tests, lung function tests. They may need to go on an inhaler for a period of time. We also do a lot with physical therapy. One really important part of treating this is also talk therapy. We’ve got a couple of different ways that we can work with kids on the anxiety that comes from being ill. Kids usually bounce back very quickly, and it’s distressing when they don’t. We work with our child life specialists who are specially trained in helping kids cope with illness. They do art therapy. They’ll do music therapy, talk therapy, different things to help the child to cope with actually being sick and to face needing to go back to school, because really getting back to their normal activities is the best treatment for this.

Any indication how long they could need the help? How long is long haul? Do we know?

DR CLOUSER: We don’t know yet. Most children are experiencing symptoms for about six months. That would be, I would say, the average that I’ve seen and across the country that people are also seeing. Some children still have some lingering symptoms even a year later. The loss of taste and smell is present in children as well. And some kids are still struggling with that little difference in taste and smell. Most of our children who we see initially by about three to four months are feeling much better. Not quite well, maybe not totally back to their normal self but better than they were before. That’s working with physical therapists and with other therapists as well.

Do you know what percentage of kids that get COVID fall into this long haul category?

DR CLOUSER: It’s an interesting question because there’s a lot of variation depending on who you look at. There was a study in the U.K. that said it was up to 30 percent of children had symptoms after a month of their initial illness. That’s what they were defining as long hauler syndrome. When you really look at kids who have had symptoms three to four to five months later, it’s probably under 10 percent. So, it’s somewhere within that 10 to 30 percent that children are going to continue to have symptoms post their initial infection.

Now you had mentioned that you’re in a collaborative of 92 centers looking at this. Can you talk to me a little bit about some of the research, some of the things, some of the new information that’s coming out from everyone kind of pooling their information together? The second part of that, is there anything in particular that you are focusing on?

DR CLOUSER: When we first started to look at this kind of syndrome, because kids were not being infected as much as adults were, we really needed to join together to learn what are the symptoms in children? What are we all seeing? So, we did kind of gather this information. We initially studied the multisystem inflammatory syndrome in children, which really looks at you know this kind of post-infection syndrome that initially was happening with children. We looked at best ways to treat it, and we really kind of come up with a standard way that most hospitals are treating children with this illness. The nice thing about that is whether you go to, you know, some of the big-name hospitals or some of the littler named hospitals, we’re all sharing information. We’ve seen side effects like risk factors for blood clots. Children are getting blood clots. We kind of now know which type of child is going to get a blood clot or which is at an increased risk and what to watch for. We also have signs of who’s going to be admitted and who’s not needing to be admitted. So, is there any risk factor that puts somebody at higher risk for needing to be in the hospital? We’ve learned a lot about that as well. That’s all from these collaboratives, which is great for parents because we’re all sharing information.

Who is at an increased risk for blood clots? Which kids? What category?

DR CLOUSER: That’s a great question. So, a lot of kids who are obese, you know, those who are overweight, are at an increased risk. Those who are needing oxygen or in the intensive care unit who are unable to move around are also at an increased risk and then anyone with a family history of that. So oftentimes, you know, parents may not know that. It turns out grandma had a blood clot. Grandma needed to be on blood thinners. Those are all the questions that we’re going to ask to talk to parents whether their child is at an increased risk.

Is that a treatment for kids, blood thinners? How do you go about decreasing the risk?

DR CLOUSER: Well, they’re in the hospital, children who are acutely ill, who are needing the intensive care, who are overweight are going to be on blood thinners during the hospitalization. We use a variety of different blood thinners. Sometimes it’s as easy as just a baby aspirin, and sometimes it’s injectable. We are more familiar within pediatrics with some of the blood thinners that you inject into yourself. Those are just because we know the dosing. We know how to kind of work with them with children. As time goes on, we’re going to do more of parents probably know a little bit more about oral blood thinners. We use those as children go outpatient. As they are discharged from the hospital, we may need to use some of those.

Is there any research that you in particular are spearheading or are interested in?

DR CLOUSER: Here at Hackensack, we’re actually working on some more kind of information about these long haulers, these children with longer term symptoms. We’re looking at their clinical features. Is there something about their infection or something about their family history that puts them at increased risk and we’re also looking at some of the markers of inflammation in their body. Is there some chemical signal that can say that, yes. This child is going to have a long hauler syndrome versus another who may not.

Do you have a trial or do you have kids enrolled where you’re testing, you’re drawing blood? Or how are you finding those markers?

KATHARINE CLOUSER: Yes. So, at this time, we’re starting to enroll children in kind of studies to draw blood. It’s obviously voluntary. Parents are working with us. But a lot of parents really want to know what was it about my child that put them at increased risk, and then we’re also tracking a lot of the clinical data, which requires nothing else from the family. You come see me. We kind of write down some of the information. We learn about your child and hopefully help to kind of learn more about this syndrome that we don’t know a ton about.

In your mind, what is it important for parents to know about COVID and to watch for in their kids at this point and as we move you know into 2022?

DR CLOUSER: I think COVID is not going anywhere, and I think that that’s one thing that parents have probably started to accept, right? They’re really adjusting to the new normal in their schools and in how things are working. I think that one really important thing is that vaccinating children, although they aren’t dying at the rates that adults are, one child who dies with a vaccine preventable illness is really, really sad, and it’s one too many. Vaccinating them is going to put them at a very small risk of dying, a very, very small risk of needing hospitalization, and it also decreases the risk that they’re going to become infected and have this long hauler syndrome, which is really debilitating to a lot of children. I think getting their child vaccinated is very, very important. It’s safe and it’s the number one way that we’re really going to get back to normal.

I’m going to kind of re-ask that question the same way. Some parents are very reluctant, very hesitant right now to bring their kids in for this vaccination. What would you say to either allay their fears or what would you say to them to consider?

DR CLOUSER: I think the vaccine is very safe. One thing that parents are really concerned about is how fast this came out, right? We have a lot of vaccines that feel like they have been studied forever and ever and ever, and this is brand new. This is not the first brand new vaccine that actually has happened in our lifetime. Influenza B, which is a bacteria, we started to vaccinate that in the ’90s and parents just kind of now vaccinate their child. There were all of these trials that happened, but they happened a little bit faster this time, and that really is only because of the way that you know the kind of red tape and different processes were sped up with the vaccine. So, it’s not that it hasn’t been studied. It’s not that we don’t know side effects. You know, we really do. It was just done a little bit quicker because a lot of the steps were moved faster. So rather than waiting for a bunch of people to get together to approve this vaccine, they were waiting for the data, which I think is something you know that people need to kind of hear. Most vaccines, if they have side effects, they have side effects within the first six to eight weeks. After that, the vaccine is gone out of the body. The vaccine is really gone out of the body within the first couple of days. It’s just your body’s response that’s actually making the antibodies. So, we’re not so worried with this vaccine that there’s going to be long term effects because there really haven’t been long term effects from any other vaccine. I think parents can rest assured that this is safe. We also don’t know the long-term effects of COVID, and so it’s kind of taking that risk, talking risk benefit. I think that the vaccine is safe. And it’s something that parents should definitely get for their children.

Anything I didn’t ask you that you want to make sure people know?

DR CLOUSER: I think that, you know, as children kind of continue down school, I want parents to know that they should continue to do their normal activities as much as they possibly can. For the most part, school is going to be safe as kids, particularly as kids get more vaccinated because we have a larger amount of the population that can get vaccinated. It’s OK for their kids to play with others. It’s OK for their kids to go play sports, all the things that we kind of have been hesitant to do over the last year. I think now’s the time to kind of think about kind of returning to some of these normal activities and also recognize that your child has a lot of anxiety about COVID. And children are going to pick up what you’re feeling. So, if you’re really worried about COVID, your child’s also going to be really worried about COVID. If you’re taking a really practical approach where you’re doing all the safe things that you can do, wearing your mask, when you’re in a situation you don’t know about – washing your hands, getting vaccinated, your child’s going to pick up on that is going to be able to feel more at ease with what’s going on in the world.

Interview conducted by Ivanhoe Broadcast News in December 2018.

END OF INTERVIEW

This information is intended for additional research purposes only. It is not to be used as a prescription or advice from Ivanhoe Broadcast News, Inc. or any medical professional interviewed. Ivanhoe Broadcast News, Inc. assumes no responsibility for the depth or accuracy of physician statements. Procedures or medicines apply to different people and medical factors; always consult your physician on medical matters.

If you would like more information, please contact:

Mary McGeever

Mary.mcgeever@hmhn.org

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