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By Melissa Hed
February 13, 2023
What is long COVID?
Was your teen infected with COVID-19? Do they have symptoms like fatigue, headaches, stomach upset, anxiety and sleep disruption lingered weeks, months, or even long past the typical 2-weeks it usually takes for symptoms of mild COVID to clear?
If symptoms of COVID linger, your teen may have a condition known as long COVID-19. Long COVID-19 is also known by various other names, such as long COVID, long haul COVID, and long term COVID, and people who suffer from it are sometimes called long haulers. Long COVID is a new condition affecting teens worldwide, and it’s often difficult to diagnose because so many of its symptoms overlap with other conditions.
Dr. David W. Miller is Medical Director of Pediatric Integrative Medicine at University Hospitals Connor Whole Health. He works with Rainbow Babies and Children’s Hospital’s Pediatric Long COVID Recovery Clinic. We sat down with Dr. Miller to discuss what doctors have learned about long COVID, and what parents can do to help our teens who are struggling with it. Here are the highlights of our discussion.
How common is long COVID in teenagers?
VERY! Miller says, “The overall population of teenagers who have symptoms of long COVID-19 is huge, and the numbers reported are both underappreciated and underestimated. In Ohio alone, we’re estimating around 28,000 kids are likely to have some degree of long COVID.”
Is long COVID hard to diagnose?
When kids have symptoms of illness typical of COVID infections, diagnosing them is easy, according to Miller.
But then there are those kids who, for example, weren’t diagnosed with COVID early on, or who display atypical symptoms, or who see numerous specialists for what they think might be unconnected symptoms — diagnosing those kids with long COVID is not as simple.
Miller says, “Long COVID is still a diagnosis of exclusion, meaning we need to be as sure as we can that another condition is not causing these symptoms and that these seemingly unconnected challenges tie back to a COVID infection.”
What are some typical symptoms of long COVID?
The most common symptoms of long COVID in teens:
- unusual tiredness or fatigue
- headaches
- brain fog (problems with concentration, recall, attention, and focus)
- changes to sense of taste and smell
Teens may also have:
- body aches and pain like with the flu
- difficulty moving
- amplified pain response
- dizziness
- abdominal pain
- gastrointestinal symptoms
- anxiety (situational and biochemical)
- low mood
- difficulty sleeping
- lowered appetite
- non-epileptic seizures
According to Miller, people have reported over 200 symptoms of long COVID! Miller says the most indicative symptoms of long COVID are fatigue to the point where a teen can’t get out of bed and a condition called Post Exertional Malaise, which is when engaging in even a small activity — like taking a walk or having a chat with a friend — causes a crash event where teens need hours or days to recover when normally they need only 10 minutes to an hour to feel better.
He says, “Many people who have long COVID basically feel like they have the flu all the time. They have that feeling of tremendous malaise, difficulty moving, body aches and pains, exaggerated and amplified pain experiences that we all feel when we catch a flu. And you just feel achy and tired and you just want to kind of curl up because you have no energy.”
Another symptom of long COVID is brain fog, and according to Miller “it is an experience of not being able to recall things that you used to remember, not being able to take on new information, problems with attention and focus.” He says, “We’ve had people who temporarily forget parts of the alphabet. They forget their pet’s names. Sometimes it’s quite profound, the foundational things people forget. More commonly, people just describe not being able to focus and concentrate.”
Many teens with long COVID also report headaches. Another big symptom of long COVID is dizziness but, as Miller explains, “it’s not the sort of dizziness where you feel like you’re spinning; it’s more like you feel faint and like it’s getting dark and there are spots in front of your eyes.”
Some teens with long COVID have abdominal pain and gastrointestinal symptoms. They also report persistent sleep disruption, appetite disruption, and sometimes loss of taste and smell. Several young people have come to Miller’s clinic because of non-epileptic seizure-like activity, a symptom which was previously extremely uncommon.
Miller says, “It’s very hard for these young people who are feeling horrible. They look fine on the outside and their testing mostly comes back normal, so people think they just have anxiety (also a symptom). We’re really trying to get the message out about this disease, because kids have a complex array of problems that make them feel crazy, but they actually fit tightly into the long COVID diagnosis.”
Are there ways to help our teens manage long COVID symptoms at home?
While there are no medicines to cure long COVID yet, doctors have determined that inflammation is one of the core problems underlying long COVID, and some of that inflammation can be controlled without medical intervention. Miller recommends that parents help their teens optimize diet, lifestyle, and sleep to help reduce inflammation so their bodies can heal.
Dietary recommendations to help COVID long haulers feel better.
- Reduce processed sugar intake, including simple carbohydrates.
- Eat more whole and fresh foods with lots of color, like berries and dark leafy greens.
- Add vitamin D and iron to your diet if you’re deficient.
- Take a good multivitamin daily.
- Drink lots of water (64-80 ounces a day).
- Consume 6 to 10 grams of salt daily to help alleviate dizziness.
Lifestyle recommendations to help COVID longhaulers feel better.
- Be moderately active.
- Stop activity before it becomes strenuous, so you don’t crash.
- Know your limits. Be mindful of when you’re dipping into your reserves.
You want to make sure that your teens are somewhat active because, as Miller says, “if they’re too sedentary, they decondition.” But here, Miller says, pacing is really important. Pacing activity helps avoid a crash in energy levels, which is important because a crash seems to prolong symptoms.
You can help your teen learn to pace themselves by teaching them to look at their day and schedule preemptive breaks before they get tired.
So, for example, if your teen can do two hours of activity before feeling like they’re pushing or exhausted, discourage them from trying to “push through it.” Instead, encourage them to cut their activity in half and plan to rest at the one-hour mark.
He says the goal for long haulers is to adjust lifestyle choices to find balance between activity and rest and not push yourself too hard.
Sleep recommendations to help COVID long haulers feel better.
- Get good, restorative sleep to help your body heal.
Miller says, “Sleep is really where your body restores itself and where the immune system reboots itself and resets. And so when people aren’t having restorative sleep, it’s actually a huge push towards inflammation and imbalance.”
Are there non-Western or alternative medicine techniques that can help alleviate symptoms of long COVID?
Yes! Miller says long COVID is a multisystem, multidimensional condition and his clinic has found success treating it with an integrative medicine. They treat the condition holistically, incorporating mind, body, and spirit techniques to help patients get well.
One of the main techniques his clinic uses for headache care and for abdominal pain is a very old, low-tech, low-cost deep tissue massage technique called Gua Sha. His clinic teaches the technique to families so they can do it at home.
Miller also shares that many patients report that acupuncture is helpful for autonomic balancing, pain control, pain management, anxiety, and depression. He says, “We are finding acupuncture to be a wonderful support; not a cure-all, but a support for many people.”
Whether the COVID vaccine helps reduce long hauler symptoms is unclear; but it’s important to get vaccinated anyway.
According to Miller, some people report that when they get the vaccine, their long COVID symptoms resolve. A large middle group reports that the vaccine doesn’t affect their long COVID symptoms one way or the other. And a smaller proportion of people report a flare that worsens their long COVID symptoms.
He says his clinic still encourages vaccination to help prevent reinfection and his best advice at this point is to get the vaccine.
How long does it take for patients to recover from long COVID?
How long does covid last in teens and adults? People started coming into Miller’s long COVID recovery clinic in late 2020. Since then, some patients have graduated, gone back to their normal activities, and are doing wonderfully. But, he says, the length of time it takes for a person to recover from long COVID is difficult to predict. “We’ve had kids who recover in a few months, and we have people who have taken 18 months to two years to really get back on their feet.”
Are teens missing school because of long COVID?
Miller says many teens miss school because of long COVID, labeling it a “huge disruptor.” Kids have had to reduce their academic load, switch to online school, take time off, and some even drop out of school entirely. “We’ve sat in on numerous IEP and 504 plan meetings to try to put plans in place for these folks,” Miller says. “These kids need to take time off from regular schooling because when they push themselves, they crash, and then they can’t function.”
Miller says he’s worried about the long-term plan and outcome for these teens. “We’re going to need, as a society, some creative thinking about how to support these young people through this process of recovery.”
Recovery from long COVID is possible.
Miller realizes that asking young people to establish good dietary, lifestyle, and sleep habits is challenging, but he hopes when teens see how making those changes improves their long COVID symptoms, they’ll stick with those changes. As a bonus, establishing those good habits will improve their health long term, too.
Rather than turning to expensive testing and procedures that aren’t likely to help and may actually harm, Miller recommends prioritizing the safest, most cost-effective, treatment options.
He says long COVID is a marathon condition and a complex journey. Conditions tend to ebb and flare, so try not to let your teen get discouraged about the ups and downs of recovery. Instead, try to be optimistic, because he’s already seen many people recover.
Additional sources.
For more information about long COVID, visit longcovidkids.org.
For information about how to help your teen get a good night’s rest:
Rethinking Teens and Sleep: Do Teenagers Need Sleep Help?
Why Are Teens So Tired? How to Amp Up Sleep and Fight Exhaustion
Help Teenagers Sleep: 5 Important Sleep Tips for Teenagers
For more information about COVID and learning loss:
What You Can Do About The Pandemic’s Negative Impact On Learning
For information about communicating with your school about an IEP plan and how to advocate for a 504 plan for your teen:
The Importance of Teaching Self-Advocacy to Students with Disabilities
Students With Learning Disabilities: Know Your Rights Under FAPE Law
IEP College: Can Teens Take Their IEP to College?
For information about anxiety and stress:
Anxiety in Teens: Psychiatrist Laura Markley Offers Advice
Is Your Teenager Suffering From Anxiety? 3 Hidden Signs of Anxiety
A Parent’s Guide to Helping Teens Understand and Cope with Stress
Breathing and Other Techniques to Manage Stress
Iron deficiency anemia:
Tired Teenagers: Could It Be Iron Deficiency Anemia?
