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Navigating the uncharted waters of long COVID in children, Elham Raker shares a deeply personal journey of advocating for her daughter’s health while questioning the medical system’s approach to chronic illness. This episode uncovers the challenges of limited resources, fragmented care, and the emotional toll on families. Together, we explore what it truly means to balance the principle of “do no harm” with the urgent need to act.
Elham Raker is a pediatrician.
She discusses the KevinMD article, “Doctors must rethink ‘do no harm’ to help children with long COVID.”
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Transcript
Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast. Today, we welcome Elham Raker. She’s a pediatrician. Today’s KevinMD article is “Doctors must rethink do no harm to help children with long COVID.” Elham, welcome to the show.
Elham Raker: Thank you for having me.
Kevin Pho: All right. Let’s start by briefly sharing your story and journey.
Elham Raker: So my story—I’m a pediatrician, as you said. I have been practicing, whatever that means, for 20-plus years. I’ve done all of it. My husband is in medicine also, so that means I’ve had to move around a bit with his training and jobs and whatnot. I’ve done some hospital medicine, outpatient, urgent care. I’ve done home visits. During the pandemic, I actually pivoted and started doing certification for parent coaching. So I’ve done that. And then recently, I did an integrative medicine scholarship program.
It’s been long. I think I’ve always been thinking, “What do I want to be when I grow up?” I’m still, I think, trying to discover that, picking up things along the way. So for now, I’m somewhat enjoying being home with the kids because of circumstances that, you know, this article that we’re going to talk about, and the coaching part.
Kevin Pho: All right. So let’s talk about this article: “Doctors must rethink do no harm to help children with long COVID.” Tell us about this article for those who didn’t get a chance to read it.
Elham Raker: Yeah. So my journey with long COVID in kids started, unfortunately, personally, three years ago with my daughter getting it. And of course, like everyone, we didn’t really know what it was at first. She came home from school, from a tournament, with just these awful, awful headaches, and they just never went away. One thing led to another with different systems getting involved, and by June of 2022, about six months after our presentation, we were pretty sure that she had long COVID.
There was nothing that any doctor offered, even when I mentioned it—when we kind of said, “OK, is this long COVID? Could this be long COVID?” It was kind of like, “Yeah, but… whatever.” And when we got to a long COVID clinic—someone that I would count on for expertise—it was very validating, which is great, right? I know a lot of these patients have been gaslit and told, “You’re fine, nothing’s wrong.” So the validation was there, but again, there was not even treatment offers, but just, “Hey, kids with long COVID are also getting this.” There’s a slew of things that are happening that I really discovered on my own from other patients, from Facebook groups. And that was just a little disappointing.
So the main thing is that we don’t know a lot of things. And I appreciate that—it’s new, there needs to be more research, which is one of my main points in my article. There’s only one research study for kids in the whole country right now. So that needs to happen, but we can’t wait for those things because these kids are really suffering. Many of them are just in bed all day—they can’t go to school, they can’t do life, they can’t see their friends, they can’t do sports. It’s significant changes to what they’ve been doing, and these are developmental years. I mean, these are really important years.
I think one misnomer is that kids aren’t getting long COVID, or they’re not getting it as bad, or they’re not getting it as much. Most of the data, I think, confirms that long COVID—again, even in adults, it’s very hit or miss. I’ve seen numbers anywhere from 5 to 70 percent of people who get COVID get long COVID, so the numbers are all over the place. But it seems to be 10 to 20 percent as the consensus, and that is the consensus for kids too. So we’re talking millions of kids, right? And with each infection, your risk of long COVID increases, so those numbers are all going to go up.
So we’re dealing with something more significant, I think, than people are aware of. Saying that kids are just going to get better— they may, but again, they can get reinfected and get worse, which is what happened to my daughter. So you have that to deal with, and even a year or two years of laying in bed for a child is just really not acceptable to just say, “Well, we’ll just wait for this to pass.”
Kevin Pho: So you said that there isn’t as much research as you would like when it comes to long COVID in kids, and you went to a specific long COVID clinic. Tell us the type of information that you received in this clinic that some of the other doctors who may not be as well versed in long COVID simply didn’t know about. What was some of this specialized information that you could share with us?
Elham Raker: Yeah, so I’d say the first thing is, unfortunately, that long COVID clinic was not helpful, but we did go—we had to go out of the country to an outpatient clinic in Denver that was seeing kids. A lot of these kids, a lot of adults, are presenting—especially the more severe cases—with something called POTS, postural orthostatic tachycardia syndrome, which I think many of us learned maybe this much about in med school. That really stems from just general dysautonomia, so the nervous system is not functioning as it should be for unknown reasons at this point. That may lead to things like gastroparesis, because the nerve innervation isn’t there. In my daughter—and a lot of children, so I think in different age groups it’s presenting differently—but headaches seem to be a pretty common presentation, stomachaches, fatigue is probably one of the top presentations. I mean, there are 200 different symptoms.
There can be lung/airway disease that is not easily identifiable on exam. So even as a pediatrician, knowing that my daughter has asthma, I did not pick up on her small airway disease. That was only caught by doing the pulmonary function testing and more advanced testing. So I think those are all things that we need to consider.
The unfortunate thing is that, unless you’re near a long COVID clinic—which there’s not many of—we have to piece-meal these different specialists, and last I heard in my city, seeing a pulmonologist was taking a year. So we have that to deal with: how do you get these kids to these specialists, and then you need someone to kind of put it all together, right? Because you have all these different specialists, they’re not necessarily talking to each other, so now how do you put the picture together?
EDS, Ehlers-Danlos syndrome, is really common in these subgroups, and MCAS, mast cell activation syndrome. It’s all very confusing, and they all seem to happen at the same time. So those are kind of the things to be on the lookout for, I would say, when you’re thinking about testing. Oftentimes, blood tests are normal. The orthostatic intolerance you should be able to pick up on exam—I mean, a tilt table would be ideal, but I know that’s very hard to get, especially for kids. Many places stopped doing it years ago. But there is the lying down and standing up, the orthostatic tolerance tests you can do in your office. Those are at least some initial things that I think would be good for all pediatricians to be aware of and to know: who are the people who may be treating long COVID to some extent that I can get these patients to? Because I know, especially in pediatrics, 10- to 15-minute visits are not enough time to go through everything happening. So really know your resources in your community at least, if you are not able to provide that care. And just be aware that there isn’t a unifying diagnosis or treatment.
Kevin Pho: And just to emphasize what you said, there is no unifying treatment that would treat all long COVID symptoms. Like you said, a lot of this has to be piecemeal through different specialists, and we’d have to treat each of these complications individually.
Elham Raker: Yeah, exactly, which is hard. It’s hard to get all of those—it’s like puzzle pieces, and you really need help putting those together.
Kevin Pho: Now, after going through this long COVID experience with your daughter, how has that changed your own practice as a pediatrician?
Elham Raker: Yeah, so I think it’s really led me to just learn more, know more, give more. I want to give patients more time, more attention. I don’t think we can do these things in these short visits, especially for more complicated chronic illnesses. That’s what led me to the integrative medicine scholarship, to learn more about different offerings, but also I like to stay evidence-based. I think that’s another pitfall: if you can’t get what you need from your doctor, you’re going to get it from somewhere else, right? And if you see your kid suffering, you’re not going to wait around and hope things get better.
I think that’s another thing that doctors need to be aware of and open to, honestly. Yes, first, do no harm, but if it’s a potential treatment that can’t hurt—even if it’s something that maybe you haven’t heard of, you’re not aware of—be open to it. Be open to the possibility that it may help them. So I think it’s, for me, just figuring out how to help emotionally, physically, mentally—all of these things—when we don’t know the answers. But it doesn’t mean we don’t try.
Kevin Pho: And how is your daughter doing now, after going to that long COVID clinic in Colorado? How is she doing?
Elham Raker: Yeah, so she actually started to improve after that, and we saw—she was able to go back to school and start doing her sport, but unfortunately, she got COVID again about a year ago. So that led us down this path again, and she’s not quite back to even her baseline from the second COVID, unfortunately. It’s a constant battle. We stay hopeful; we keep—I keep reading and hoping for new studies and new things to come out. But we have physicians that are a little bit more versed in the long COVID world, so that’s helpful. I think that’s really important, to find a partner who’s willing to try things for you. Much of what we have done this past year has definitely been out of the box, not FDA-approved. So you need to find doctors that are willing to do those things with whatever research is available, right? There’s not a ton, but there’s some things to show that they’re safe at least. So we’ve done a lot of that, and she’s still fighting. We’re hopeful.
Kevin Pho: So what are some examples of these unconventional treatments that you alluded to?
Elham Raker: Yeah, so I would say one of the top ones that keeps coming up is low-dose naltrexone. Naltrexone has been around forever. The idea being that the low dose is actually anti-inflammatory. It’s a little difficult because there’s no real “start at this dose and get to this dose,” or “this is the dose that…” Everyone’s different. So you start at a really low dose and go up until you find kind of the magic dose somewhere between 0.5 and 4.5. That’s what’s been most studied. Some people need to go higher; some people can’t tolerate it. But I do think it’s one of the ones that’s shown promise. Unfortunately, it has to be compounded, so that’s another expense. A lot of these are not FDA-approved treatments, so insurance won’t cover them.
Then there’s—MCAS is something that I feel like it’s pretty prevalent within the long COVID community, whether it’s the chicken or the egg, right? Whether they had it and then it just is more prominent or whether the long COVID initiated it, it’s hard to know. But H1 and H2 blockers, so something like Zyrtec and famotidine, can be helpful, especially if you have these unexplained hives or rashes or something happening that could be MCAS. So the histamine blockers are something to try in that case. A lot of times, it could be headaches, stomachaches; those things can be caused by that too.
Treatment for POTS could be very helpful. So if your main thing is standing up, dizzy, falling down, you certainly need to be seen by a cardiologist or someone experienced with that to help direct that, because it really depends on what your blood pressure is, how it changes from sitting to standing—all those other things—before you decide which medication could be best.
And then there’s a slew of supplements, right? The supplement world always comes into play. In my experience and from my reading, I would say that coenzyme Q10 is one that’s been recommended pretty consistently for mitochondrial support. Other ones that I haven’t tried but hear about are NAC, NAD, methylene blue—those are all the mitochondrial supports. Omega 3s—I think everyone needs Omega 3s. In my daughter’s case, she’s allergic, she doesn’t eat fish, so we definitely wanted to make sure that was on board. Magnesium and vitamin D, especially magnesium for sleep or headache support, vitamin D for immune support. Those are kind of the basics, to be honest, that you may—and you can imagine, the supplement world just keeps going and going, and you can have a meal of supplements. We do try to kind of keep it to things that we really think would be helpful.
Kevin Pho: How difficult was it for you to find a clinician who would partner with you and be willing to try something that may be unconventional?
Elham Raker: I think we’re fortunate in that we’re in the medical world, so we could ask people and get referrals. We were able to find doctors. I don’t know how people would do it when they don’t have that connection, which is another thing that I’m passionate about—how do we get this information out to more people, and how do we get people who maybe aren’t on the internet, or aren’t able to read, or aren’t able to do all that, to find the people that can help them? Along with the research, we really need more clinics, more long COVID clinics, so it does become more accessible. I do hope that happens in the next year or two.
Kevin Pho: We’re talking to Elham Raker. She’s a pediatrician, and today’s KevinMD article is “Doctors must rethink do no harm to help children with long COVID.” Elham, let’s end with some take-home messages that you want to leave with the KevinMD audience.
Elham Raker: Thank you, Kevin. I think just lessons from these past few years—we haven’t been gaslit, quote unquote, but it can be minimizing. I think that if you have a patient with these vague symptoms coming in and the labs are normal, nothing makes sense, just really listen to them. Really don’t dismiss them, even if you don’t think you can help them. Having someone that believes you, that believes in you, can make a huge difference. And giving these patients hope can make a huge difference.
Kevin Pho: Elham, thank you so much for sharing your story, time, and insight. And thanks again for coming on the show.
Elham Raker: Thank you, Kevin.