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The COVID Long Haul: Lorain County teen recovers after losing use of her legs for months

Both mother and daughter are battling lingering effects of COVID-19, but neither had any idea the damage it could cause months later.

LORAIN, Ohio — Eliana Rosario is like many 14-year-olds. She loves to hang out with friends, she plays flute in the school band, and like a lot of other kids, she got COVID.

In fact, her entire family was infected over Christmas 2020.

"I was coughing, a lot of body aches, chills, definitely lost my sense of smell and taste," Eliana said. "I mean, I still don't really have that back yet."

Little did she know the virus would wreak far more havoc on her body over the next 10 months. A nagging symptom slowed her down.

"It felt like someone was, like, pressing on my chest," she explained. "Like, it was hard for me to breathe when it happened. It's very uncomfortable."

Eliana's doctors initially linked the symptom to anxiety, but just after her school band played half time at the October homecoming game, her world came crashing down.

"I wasn't able to move my arms a lot, or my legs," she remembered. "I couldn't turn my head to the right, and my right side was a lot weaker than my left."

Eliana remembers the event, but couldn't communicate well. Her mother Jessica rushed to her side, saying that it seemed her daughter had "zoned out."

An ambulance took Eliana to Rainbow Babies and Children's Hospital, where a team of doctors were waiting. One of them was Dr. Amy Edwards, a pediatric infectious disease specialist who is also running the hospital's Pediatric COVID Long Haul clinic. She had seen cases like Eliana's before, where symptoms resembled that of a stroke.  

"There's no stroke that I can show you on MRI," Edwards said, referring to her patients, "but yet some part of the body doesn't work for my kids, and it's mostly their legs."

At this time, there are more than 50 such kids being treated in Rainbow's Long Haul clinic. Eliana spent eight days there, and four days in, she had another "zoning out" episode, only this time the doctors saw it firsthand.

Jessica remembers how the doctors explained what they thought was happening to her daughter.

"What they had told me was that her immune system was attacking her from within," she said, "and therefore it just came to a point where her body just couldn't handle it, which I had no idea the whole time, from January to August. I had no idea that this is what was happening to her."

Doctors determined postural orthostatic tachycardia syndrome, or POTS, is likely the cause of Eliana's chest pressure and breathing problems, but there was something else: A functional neurologic deficit — meaning the signal to move her legs — wasn't transmitting from her brain.

"I know what's wrong, I can see it before me, but I don't know at the molecular level inside the body exactly what's wrong," Edwards described. "I don't know why the signal's not getting from the brain to the legs, but clearly something is getting lost."

Eliana left the hospital in a wheelchair. She went back to school online, and spent the next few months spent in physical therapy trying to get her legs to move again.

All the while, she had company battling the COVID Long Haul syndrome. Her mom got COVID at the same time and is still experiencing extreme fatigue, likely made worse because Jessica also has multiple sclerosis.

Wait lists for COVID Long Haul clinics are months out, so Jessica is paying attention to what Eliana's doctors are advising her to do.

"What they have taught Eliana so far, I've been applying it to myself," Jessica said. "I try to get as much rest as I can. I never took naps during the day, but now I have."

"One of the mainstays of COVID recovery is lifestyle," Edwards added. "We do not have a magic bullet, we don't even know 100% what's wrong, so what I have to do is harness the power of the child's body to heal itself."

That includes eating a strict clean diet: no processed foods or junk food. Supplements may be prescribed as well as significant rest, meaning cutting back on screen time and getting at least eight to 10 hours of sleep with consistent wake and rise times.

"If COVID has taught us anything, it's taught us that we don't take very good care of ourselves," Edwards said, "so it's really about educating the families [about] how to take care of themselves, how to eat healthy, how to not have so much sugar and junk food in our diet, how to sleep. Believe it or not, a lot of our kids don't know how to sleep. They're on YouTube until 8, 9, 10, 11 o'clock at night, and then they just fall asleep out of exhaustion."

Over the last few months Eliana graduated from a wheelchair to a walker and a cane. Six months later?

"I started running, actually, a couple weeks ago," she declared. Her mom calls her a miracle.

Meanwhile, all are hoping Eliana's story may help educate the community — including physicians — about COVID Long Haul Syndrome. Edwards says the initial reaction from other doctors is that the child is faking.

"A lot of these kids, by the time they come to me, they genuinely feel like they're crazy, like there's something fundamentally wrong with them because all these doctors are telling them that there's nothing wrong with them," Edwards admitted. "Yes, about 65% of our kids with long haul also have anxiety; I would, too, if my body stopped working all of the sudden. But this isn't just anxiety; a patient's body has been fundamentally changed by this virus, and we need to help them to regain some of that function so that they can get their life back."

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