That’s all it took to transmit a rare, dangerous and debilitating tick-borne disease that made an energetic, witty and generally healthy three-year-old American boy seriously ill.
Jamie Simoson’s motherly intuition pushed her to seek further medical treatment for what her young son’s pediatrician assured her was a virus that had to run its course, the NY Post reports
However, he later learned that it required weeks of medical attention and could have lifelong effects.
Jonny Simoson of Pennsylvania was swimming in a neighbor’s pool on June 15 when his mother noticed a small spot on his right shoulder blade. It was a tick smaller than a pen tip.
“It wasn’t embedded. It wasn’t engorged. I pulled it out easily with tweezers and it was still alive,” Ms Simonson said. “I didn’t necessarily have marks on my back shoulder until a few days later – there was just a little red bump. That was it.”
About two weeks later, Jonny’s daycare called to say he wasn’t feeling well.
“He was mopey, he wasn’t hungry, and the fact that he was complaining of a headache was not normal for a three-year-old,” Ms Simonson said.
That same morning, his mother said he had been eating breakfast, playing with water guns and having the time of his life.
Her symptoms worsened over the next two days. After a visit to the pediatrician, Johnny was sent home with some supportive medications. That night he woke up with a fever.
“We called the doctor the next morning and I told him he was sleeping a lot and it’s really not like him,” Ms Simonon said.
After a second visit to the doctor, she took her son to the emergency room as his fever rose above 104 degrees (40°C). He also showed no reaction to a Tylenol suppository, which was abnormal for a typically rambunctious boy.
Days in the hospital turned into weeks. Elevated white blood cell counts increased to 30,000. He was unusually drowsy and showed no signs of animation after intravenous administration.
A spinal tap found that she had increased neutrophils, a type of white blood cell that acts as the immune system’s first responders, in her cord fluid. He was treated for bacterial and viral meningitis until doctors ruled them out.
Johnny was transferred to a specialist children’s hospital, where he spent four days in the pediatric intensive care unit undergoing a coronary CT scan to rule out a brain bleed, abscess or mass. All this was discarded.
“Things got really scary at the time,” Ms. Simonon said. “It was very frustrating to search for an answer. We were terrified that we wouldn’t be coming home with our son.”
However, after an MRI, neurologists were able to diagnose him with meningoencephalitis, an infection of both the brain and the thin tissue surrounding it. After a night of intravenous immunoglobulin, a treatment for antibody-deficient patients, there were signs of hope.
Mrs. Simonon believes that IVIG made a difference for her son.
“Within 15 hours of her first dose, I heard ‘Mom, is that pepperoni pizza?'” she recalled.
In reality, it was simply a tissue box. To Johnny, though, it looked like a pizza box, and that’s all the boy wanted: a slice of pie.
“So we started asking him questions to try to gauge his cognitive ability at this point,” Ms. Simonson said.
After nearly five full days of no response, her son was alert and talking.
“It was amazing. It was the first time since the whole situation started that my husband and I completely broke down,” she said confidently, finally knowing that her youngest son would be heading home soon.
There was light at the end of the tunnel for Johnny, but the toll of isolation was devastating.
“Isolation is difficult for a young child,” Ms Simonson said. “He started delirious in the ICU and when he was allowed out of isolation, he didn’t want to go back in the room.”
His parents had to teach him to eat and drink again, as well as to sit and speak clearly.
“We had discussed inpatient rehab with PT/OT, but found that the paperwork would delay our discharge for up to three more days,” said Ms. Simonon.
They agreed that taking him home and seeking outpatient services was acceptable.
“We knew coming home was going to be difficult,” Ms Simonson said. “He is active and doesn’t understand his limitations. We were so excited to get out of the hospital but so scared of what will happen next.”
After 12 days, Johnny was finally discharged.
“Johnny wasn’t walking yet and his balance was poor,” Mrs Simonson said. “We knew we had a lot of work to do, but we were up for the challenge.”
Three days after being discharged, Ms. Simonon said, Johnny tested positive for the Powassan virus, a rare and dangerous tick-borne disease.
According to the Centers for Disease Control and Prevention, human Powassan virus infections have been found in the US, Canada and Russia.
In the United States, cases of Powassan have been reported primarily in the northeastern states and the Great Lakes region. These cases mostly occur in late spring, early summer, and mid-autumn, when ticks are most active.
There have been only 178 reported cases in the US since 2011.
Ms. Simonon said her son is recovering but still has some noticeable impairments on the left side. She has started a Facebook page, so others can follow her journey.
“He seems to have regressed a bit cognitively, but we’re optimistic that his resilience will see him through,” she said.
Ms Simonson is now urging others to prevent tick bites and advocate for their children.
“You’re the only one who knows them and what’s normal for them, and if you’re not feeling well, stand up for them,” he said. “Don’t feel like you’re interrogating someone. That’s your job.”
Ms Simonon is also asking people to donate blood. Her son received five doses of IVIG, a blood product, during his hospital stay. With each dose, he said, doctors saw steady improvements.
“We’re sure, it can’t be proven, but deep down we know that IVIG was the turning point for Johnny, and if there’s anything we can do to help someone else get that treatment quickly, that’s really our goal “, he said.
This article originally appeared in the NY Post and is reproduced with permission