Symptoms of the Powassan virus of the mother of the child infected by the tick bite

A Pennsylvania mother warns other parents about the dangers of tick-borne diseases after her 3-year-old son contracted Powassan virus from a tick bite.

It led to swelling of the boy’s brain and surrounding tissues, turning a boisterous, healthy child into a febrile, lethargic pediatric intensive care patient in a matter of days.

Jonny Simoson is doing much better now, but the effects of the ordeal, including weakness on his left side and differences in speech, linger, his mother said.

“We are optimistic that it will get better over time,” Jamie Simonon, 38, told TODAY. “Unfortunately, we just don’t know. I don’t think anyone knows. It’s so rare and it’s been so under-researched that I don’t think we can answer those questions, which is scary.”

Jonny was a healthy child before the ordeal.
Jonny was a healthy child before the ordeal.Courtesy of Jamie Simonon

Jonny loves pepperoni pizza, peanut butter and Nutella sandwiches, playing with friends, and swimming.

On June 15, he and his mother were at a neighbor’s pool in Harveys Lake, Pennsylvania, where the family lives. As the boy was about to jump into the water, Simoson noticed a stain on his right shoulder blade. It turned out to be a tick, which he quickly removed with tweezers.

Living in a wooded area, the family is very familiar with ticks — Jonny’s 10-year-old sister tested positive for Lyme disease in 2019, Simoson said — so they’re very vigilant about checking the kids for ticks. parasites.

But the family had never heard of Powassan virus disease, a rare disease transmitted by infected ticks. Only 20 cases were reported in 2020, the most recent year for which statistics are available, mostly in northeastern states and the Great Lakes region, according to the Centers for Disease Control and Prevention.

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The virus can cause an infection of the brain or the membranes around the brain and spinal cord, with symptoms appearing a week to a month after a tick bite, the CDC noted.

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On June 28, nearly two weeks after Jonny’s tick was removed, his daycare called to report that he was depressed, didn’t want lunch and “wasn’t acting like himself,” Simoson said. For the next day or so, he complained of a headache and felt miserable. The boy was tested for COVID-19, but the result was negative. Strep throat tests and urine tests were also negative. His pediatrician suspected something viral that needed to “run its course,” Simonon recalled.

But when Jonny developed a fever of 104.3, there was also a suggestion that he might need IV fluids in a hospital.

“At this point, I’m falling apart,” Simoson recalled as she and her husband rushed Jonny to the local emergency room. “Every time we talked to someone, I insisted that she had been bitten by a tick…but it was negative for Lyme disease.”

Jonny's mom took a picture of the little tick she removed from his shoulder blade.
Jonny’s mom took a picture of the little tick she removed from his shoulder blade.Courtesy of Jamie Simonon

Doctors did more tests, including a chest X-ray and an ultrasound of the stomach. Blood tests showed Jonny’s white blood cell count was 30,000, at least three times higher than normal, indicating an infection. He was admitted to the hospital on July 1.

A lumbar puncture was performed to test the boy’s cerebrospinal fluid, and the results pointed to viral meningitis, Simoson said.

She and her husband called July 2 “the absolute worst day.” Jonny was limp in her arms as she hugged him. The local hospital recommended moving the boy to a children’s hospital in Danville, Pennsylvania, an hour and a half away. They arrived there in an ambulance and the family was met with a great deal of activity. Jonny’s heart rate began to slow and doctors were concerned about his altered mental state.

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“When they took him in for the CT scan, we didn’t think at all that we were going to go back to our son,” Simoson said.

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“My husband said straight out, ‘Is he going to survive this?’ Because of course he’s on our minds all the time, but no one wants to ask that question,” said Jamie Simoson.Courtesy of Jamie Simonon

Much to the couple’s relief, the scan ruled out a brain hemorrhage. An MRI then provided a diagnosis: meningoencephalitis, inflammation of the brain and surrounding tissues. Doctors described it as a combination of meningitis and encephalitis, Simonon recalled. A treatment called IVIG (intravenous immunoglobulin) may help.

On July 4, about 15 hours after Jonny received the first dose, Simoson suddenly heard him say, “Mommy, is that pepperoni pizza?” It was the first time he had spoken in three days. The boy was awake and looking at a cart in the room that looked like a pizza box.

“That was the first point since we got into the hospital that we really knew deep down that he was going to be okay,” Simonon said. “We finally got to see our son before all of this happened. We both fell apart.”

Jonny was released from the hospital on July 12. But the real reason for his ordeal wasn’t known until a few days later, when ongoing tests of his spinal fluid showed he was positive for the Powassan virus, his mother noted.

“I called my husband and said, ‘You have got to be kidding me. The whole time it was that stupid little tick. She knew,’” she recalled.

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“I googled it and thought, what the hell is this? What are the possibilities?

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“What we see now is just optimism,” said Jonny’s mother. Courtesy of Jamie Simonon

Jonny was unable to walk at first, had balance problems and was showing signs of cognitive regression. But he has improved a lot since then and he walks by himself, swims, laughs and plays, his mother said. Still, his speech is different and he has weaknesses on the left side.

“His doctor said his brain was damaged, it has to heal and it affects everything,” said Simoson, who has been documenting the family’s trip on Facebook. “We’re optimistic that he’ll get better with time…Overall, we see Jonny again, he’s just amazing.”

Families need to be aware that tick-borne diseases are real and preventable: check your children for parasites, be vigilant and pay attention, he urged.

“The most important thing is that you stand up for your children,” Simonon added. “If you feel like something isn’t right, you need to push for answers. The first time we saw the pediatrician, he said it’s viral…it has to run its course. Fortunately for Jonathan, we insisted that something else was wrong.”