For months, she’s battled long COVID symptoms. Now, diagnoses shed light on how COVID affects teens

Sometimes, it’s a daily battle. Other times, it’s hour by hour.

“I can’t expect to have a good day tomorrow–or the next week.”

It’s been nine months since Ava Pennycook’s first positive test for COVID-19, kicking off a two-week stretch of serious fevers, chills, loss of appetite, and stomach pain. When that subsided, the Janesville 16-year-old was in for months of nausea, fatigue, brain fog and a litany of other symptoms–an experience familiar to the longhaul COVID world.

News 3 Now shared Ava’s story three months in; today, the symptoms continue amid a whole new battle with fresh diagnoses. Maintaining a normal, healthy teenage life has been barely possible over the past two school semesters. She’s been able to get her grades back up to pre-COVID levels, but it takes longer–and it’s harder.

“I know that it’s not gonna stop if I don’t understand it and like, accept it,” Ava said. “But it’s hard.”

At times since last fall, her symptoms have gotten better. She’s been able to participate in cheerleading, on and off, with a lot of patience and understanding from teammates and coaches.

But the pendulum has also swung the wrong way and gotten worse, particularly around the New Year, Ava said. Thanks to new COVID-related diagnoses, she at least understands better now what she’s dealing with: in February, she was diagnosed with postural orthostatic tachycardia syndrome, more commonly known as POTS.

POTS is an autonomic blood circulation disorder of the central nervous system, which controls the body’s automatic functions like heart rate, blood pressure, circulation, and temperature regulation. Symptoms include fatigue, brain fog, dizziness, and very low energy; severe cases can lead to fainting after standing up.

There’s usually a trigger. For athletes, it can be a broken bone or a concussion. Other times, it’s a virus. In a rising number of cases, that trigger is COVID-19.

Autonomic conditions after COVID-19

Erin Marriott, a pediatric cardiology nurse practitioner and POTS specialist at the American Family Children’s Hospital in Madison, says she’s treating a number of local teenagers for autonomic conditions following a bout with COVID-19. Some of them have been diagnosed with POTS, others have similar conditions or symptoms that haven’t quite risen to the level of a POTS diagnosis.

“Their COVID infection is not very severe,” she explained. “They didn’t even have a fever, they maybe had cold-like symptoms.”

Months after testing positive, she says they’re struggling to return to their pre-COVID energy levels. When Marriott first saw Ava in February, her symptoms had started improving and she put Ava on medication and a treatment plan to get her farther down the path for healing. Ava’s mother Amy said a regimen of 80 to 100 ounces of water daily, multiple salt tabs, compressed stockings, and salty snacks had significantly improved Ava’s dizziness.

“There isn’t a lot of data about teenagers experiencing longhaul COVID,” Marriott said. “So I think it’s something evolving.”

Studying the long term effects of COVID-19 is a priority at Johns Hopkins University, which is one of several facilities receiving funding for that purpose. Associate professor and neuromuscular medicine specialist Dr. Tae Chung, who treats POTS and is studying the long term effects of COVID in connection with autonomic dysfunctions, said the overlap between POTS-type symptoms and long term COVID are increasingly frequent.

Many of the symptoms following long term COVID were similar or the same to patients who are diagnosed with POTS, he explained. That’s led to doctors increasingly testing for POTS in patients experiencing long COVID symptoms.

“We still don’t know exactly what’s going on,” Dr. Chung admitted. “But it looks like the COVID virus has something specific about the autonomic nervous system…it can directly or indirectly damage some portion of our autonomic system, causing different types of conditions such as POTS.”

How long it continues after COVID–and how COVID triggers it–is the million dollar question, Dr. Chung said. But he believes that it could be one of the more common long-term results of COVID-19, potentially moreso than other long-term effects like lung or heart conditions.

“Of course, we have to do more careful research to see the exact number of these autonomic dysfunction versus these other conditions,” he noted.

A turn for the worse

While some POTS-related symptoms like dizziness started to see some mitigation under treatment, Ava’s mother Amy said, lab work done by Ava’s primary pediatrician at MercyHealth in Janesville based on other symptoms returned this week with new, discouraging results.

Ava was diagnosed with Addison’s Disease and Celiac Disease, Amy told News 3 Investigates in an email. The two autoimmune-related conditions left the family discouraged. Her adrenal glands weren’t functioning properly, they learned, leading to some of Ava’s ongoing and extensive fatigue.

“We are heartbroken to say the least,” Amy wrote. “It’s been a very rough few days. Ava is handling things like a champ and we are focusing on getting her feeling better!”

Some variations of POTS seem to commonly be accompanied by a separate autoimmune disorder, Marriott noted. There’s more than 80 types of autoimmune diseases, according to Johns Hopkins Medicine, and the underlying root cause is the body being unable to differentiate between its own and foreign cells, leading to attacks on various parts of the body.

“Some patients have a co-condition that goes along with [POTS] as an autoimmune disorder. They’re separate but we often see them together,” Marriott explained. “There seems like there is a type of POTS that is more common with autoimmune conditions.”

POTS: a common but frustrating diagnosis

A patient often doesn’t get a POTS diagnosis even after the standard array of lab tests, X-rays, or electrocardiograms (EKGs), Marriott said. It can take sometimes a handful of providers before a POTS diagnosis is reached; doctors can’t find what’s wrong, and all the patient knows is that they feel terrible.

But it’s also not an uncommon diagnosis for teenagers, particularly teenage girls. Young women in their 20s and 30s are another frequent demographic; Marriott said the ratio of POTS diagnoses in women versus men is as high as 5 to 1.

What’s good news about the connection between COVID and POTS is that there are successful treatment plans for the syndrome, Marriott noted. However, a person also shouldn’t assume that they have POTS if their post-COVID symptoms line up with those symptoms.

“There’s a lot of hope for people who are suffering from long haul COVID, that we’re learning more about it everyday,” she noted. “There are good [POTS] treatments out there already.”

For Ava, her battle with both POTS and the new autoimmune condition diagnoses will continue–and put a pause on some of her former high school plans. She won’t participate in Allstar cheerleading in the next school year, she says. She hopes, at least, she’ll be feeling good the day prom rolls around.

But for the most part, her social life has taken a much more dialed-down approach.

“I feel like I have to take a break to be able to focus on myself.”