Fargo boy felt like he was ‘burning alive’ from rare COVID-19 complications

Tristian Castillo of Fargo at first had no symptoms from COVID-19. But weeks later he developed a rare inflammatory syndrome that has afflicted 2,000 children in the United States. Doctors can't explain why a few children are at risk.

Desiray Castillo comforts her 7-year-old son, Tristian, while he was hospitalized for rare complications stemming from COVID-19. Special to The Forum

FARGO — Tristian Castillo’s brush with the coronavirus seemed to leave him unscathed.

His mother came down with a case of COVID-19 with many of the classic symptoms, including fever, constant chills, major body aches and the worst migraine she’d ever experienced.

But she recovered and her 7-year-old son appeared completely normal the entire time.

“He showed no symptoms,” Desiray Castillo said. “He had no headaches, no fever, no fatigue.” Five weeks after her bout with COVID-19, the family decided it was safe to go out to dinner to celebrate the graduation of Desiray’s sister.

Then, in the middle of the night, Tristian woke up with a fever. “He was burning up,” running a temperature of 101 to 102 degrees.


The possibility that his fever might have anything to do with COVID-19 never entered her mind. Later, she would learn that there was a connection.

Desiray gave her son over-the-counter pain relievers to try to reduce his spiking temperature. “The fever never seemed to break the first 24 hours,” she said.

She took her son to the clinic, where she discovered a lump on the back of his neck that turned out to be a swollen lymph gland — normal, the nurse said, since he was running a fever. But the fever was getting worse.

“He said he felt like he was burning alive,” she said. Tristian told his mother, “It feels like my stomach is burning inside.”

The evening of the next day, Dec. 17 — 36 days after Desiray was diagnosed with COVID-19 — she took Tristian to the emergency room at Sanford Medical Center. On the drive from their south Fargo apartment, Tristian was squirming, trying to get comfortable, and screaming in pain.

“This was more than fever from the pain he was explaining,” she said. His skin felt like a heating pad.

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A nurse took his temperature, and hesitated before reporting the reading. “Oh wow,” she said. “I’ve never seen a temperature that high.” His fever was running a little over 105 degrees.

“I broke down,” Desiray said. Doctors ran tests, which showed some abnormalities, but Tristian's temperature ebbed after taking aspirin, and he was allowed to go home.

By the next evening, his condition worsened. “He was super hot again,” Desiray said. And he started shaking, his eyes rolling back — Tristian was having a seizure. He started screaming and said, “I have to go to the hospital,” the place he was eager to leave the night before. “I don’t care.”

This time, still running a fever of 105 degrees, he was admitted to the ninth floor. Only later would Desiray learn that Tristian was in the pediatric intensive care unit. His mother assumed he would be there for a day — but it wasn’t long before she worried whether her only child would be coming home.

* * *

Desiray Castillo didn’t sleep those first two days her son was in intensive care. She stayed at his bedside constantly, later joined by his father, Keith Lopez.

“We didn’t know what to expect,” she said. “We didn’t know anything.”

Those days were a blur of doctors and nurses, tests and medications. It seemed like a horrible dream. “It’s like I was not really there,” Desiray said. “I can’t really explain it.”


The only answer the doctors had in those early days was that Tristian’s body was overtaken by inflammation.

Tristan was sleeping most of the time, which brought relief from his symptoms. As she waited for answers, his mother worried. “I knew something serious was wrong,” she said. “We didn’t know yet what this was called.”

On the third day in the hospital, Tristian woke up. He was more talkative, but broke out in a rash. “It looked like a million mosquito bites all over his chest, his back.”


Desiray’s mind was filled with dark worries and nagging self-doubts. Her family always wore masks — she knew how serious COVID-19 was after an uncle and grandmother became seriously ill from the disease. Her family always wore masks and she sanitized obsessively.
But still her son got sick, horribly sick.

“I was so mad, mostly at myself,” she said.

Then she got the answer she had been waiting for: Tristian was battling something called Multisystem Inflammatory Syndrome in Children, commonly called MIS-C, which afflicts a small percentage of children who have had COVID-19 or been exposed to the coronavirus.

So far, 2,060 cases of MIS-C have been reported, including 30 deaths, to the Centers for Disease Control and Prevention. The cases have been reported in 48 states, including up to 10 in North Dakota and 50 in Minnesota.


Researchers don’t know why some children with COVID-19 — even those like Tristian who initially showed no symptoms — develop the inflammatory syndrome. But some groups appear more susceptible: 69% are Hispanic or Latino or African American and 58% are male, according to the CDC.

“It definitely is a marked inflammatory response that has to affect multiple organ systems,” said Dr. Michele Pasierb, a pediatric cardiologist who treated Tristian. In Tristian’s case, his heart was inflamed and enlarged, hampering its function.

He was given intravenous immunoglobulin to give his immune system a boost. Unfortunately, that didn’t improve his symptoms. So doctors then gave him intravenous steroids to tame the inflammation.

By his fifth day in the ICU, Tristian was awake most of the time, but still in constant pain and bothered by itchy eyes. He wanted to get out of bed. “I want to shower,” he told his mother. “I want to get up.”

He was weak, so his mother helped him take a shower. “I think I want to try to eat,” Tristian said.

“Are you sure?” his mother asked, surprised.

“Yeah, I’m hungry,” he said. He wanted a meal from Burger King, and the doctor said it was OK, so Desiray ran the errand, grateful to escape the confines of his hospital room. “I was going crazy,” she said.

For days, she had kept her emotions hidden in a bottle, repeatedly retiring to the restroom where she couldn’t be seen crying. “It was really scary.”


It was when she returned with Tristian’s food and when she was directed from the hospital lobby to his room that she learned that he was in the ICU. “When they told me, my heart dropped,” Desiray said.

Tristian took a few nibbles, then started feeling sick. Again he complained of the burning sensation and the itching. His abdomen was swollen and tight. The ordeal seemed endless.

* * *

Finally, a turn for the better. Tristian’s body responded to the intravenous steroids; the inflammation was going down. Tests and ultrasound studies showed his heart was better.

And he was feeling better.

More than 50 family members gathered outside to show their support. Tristian was able to see them through the window, far below the ninth floor.

Tristian announced that he felt better. He changed and showered and went to the play room, where he stayed for three hours. He couldn’t lift the basketball above his head, and his arms shook from weakness, but he was visibly much better.

He was able to walk back to his room without assistance.


But he hadn't yet recovered. When he returned to the room he began “freaking out.” “Mom, they’re going to get you,” he shrieked. “They’re all over the floor.”


That was Dec. 22. The prospects of being able to go home for Christmas seemed dim, but Tristian was comforted when his parents told him that Santa Claus could visit him in the hospital.

But the next day he was doing so well that his intravenous fluids and his intravenous steroids were discontinued. He returned to the play room and went for a long walk, his longest yet, around the night floor.

The following day, Christmas Eve, his doctor asked Tristian a question. “Hi buddy, how are you doing?” He then asked him what plans he had for the day.

“How ‘bout you go home instead?” the doctor said. The family was overjoyed. “It’s like a Christmas miracle,” Desiray said.

In the weeks since, Tristian has steadily improved — most children who develop MIS-C do recover, an important message for parents to keep in mind, Pasierb said. Today, Tristian is almost completely normal, his mother said.

He’s self-conscious about the weight he gained from the steroids, she said. His heart inflammation went down and his heart function is normal, but will require follow-up exams and tests. “We’re monitoring for any other signs of inflammation and damage to the heart,” Pasierb said. “The improvement in the heart function tells us the treatment is working.”

Desiray is thankful for the care and treatment Tristian received, and is grateful for his recovery.

“I’m so glad I didn’t know anything about MIS-C going in,” she said. “To know that there’s a cure and this will be fine …” her words trailed off and she formed a smile.

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