That’s all it took to infect an energetic, intelligent and healthy 3-year-old boy in Pennsylvania with a rare, dangerous and debilitating tick-borne disease.
Jamie Simoson’s motherly intuition led her to seek further treatment after her youngest son’s pediatrician convinced him it was a virus. However, she later learned that she needed weeks of medical attention and could have life-long effects.
The moment that changed everything
Johnny Simonon was swimming in a neighbor’s pool on June 15 when his mother noticed a small spot on his right shoulder. It was a tick smaller than the tip of a pen.
“It was not included. It is not full. I easily removed it with tweezers and it was still alive,” Simoson said. “For a few days there were no spots on his back shoulder; There was a small red bump. That’s it.”
About two weeks later, Johnny’s daycare called to say he wasn’t feeling well.
“He was lethargic, had no appetite, and his complaints of headaches are not normal for a 3-year-old,” Simoson said.
Later that morning, his mother said he was 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. He woke up that night with a fever.
“We called the doctor the next morning and I told him he was sleeping a lot and it really didn’t look like him,” Simonon said.
After the second visit to the doctor, his son’s temperature rose to 104 degrees, so he was taken to the emergency room. He also had a reaction to a Tylenol suppository, which was abnormal for a normally rambunctious child.
Days in the hospital turned into weeks. The number of white blood cells increased to 30,000. He was unusually drowsy and showed no signs of recovery after IV fluids.
The spinal cord was found to have increased neutrophils, a type of white blood cell that acts as the immune system’s first responder, in its spinal fluid. He was treated for bacterial and viral meningitis before doctors ruled him out.
Johnny was transferred to a special children’s hospital, where he spent four days in the pediatric intensive care unit and underwent a coronary CT scan of an abscess or mass in the brain. All these have been cancelled.
“It was very scary at the time,” Simonon said. “The search for answers was very frustrating. We were afraid that we will not come home with our child.
However, after an MRI, neurologists diagnosed him with meningoencephalitis – an infection of both the brain and the thin tissue surrounding it. After one night of intravenous immunoglobulin, which treats patients with antibody deficiency, there are signs of hope.
Simonon believes IVIG made all the difference for her son.
“Within 15 hours of her first dose, I was like, ‘Mom, is that pepperoni pizza?’ “I heard,” he recalls.
Actually, it was just a tissue box. But to Johnny it looked like a pizza box, and all the boy wanted was a slice of pie.
“So we started asking him questions to measure his cognitive ability at this point,” Simonon said.
After being unresponsive for almost five days, the son became alert and able to speak.
“It was amazing. This is the first time since the situation that both my husband and I have been in,” she said with confidence, knowing that their little boy would finally be heading home soon.
There was light at the end of the tunnel for Johnny, but the isolation was devastating.
“Isolation is hard on a child,” Simonon said. “He started to get delirious in the ICU and when he was allowed out of isolation, he didn’t want to go back into the room.”
His parents had to teach him how to eat and drink again, as well as how to sit and speak clearly.
“We discussed inpatient rehab with the PT/OT, but found the paperwork would delay our discharge for another three days,” Simoson said.
They agreed to take him home and seek outpatient services.
“We knew it was going to be tough coming home,” Simonon said. “He’s active and doesn’t understand his limitations. We were very happy to leave the hospital, but we were afraid of what would happen next.”
After 12 days, Johnny was finally released.
“Johnny still wasn’t walking and his balance was bad,” Simonon said. “We knew we had a lot of work to do, but we were up for the challenge.”
A rare virus
Simonon said three days after his recovery, Johnny tested positive for the rare and dangerous tick-borne Powassan virus.
According to the Centers for Disease Control and Prevention, human Powassan virus infections have been found in the United States, Canada and Russia. In the United States, Powassan cases are primarily reported in the northeastern states and the Great Lakes region. These cases mainly occur in late spring, early summer and mid-autumn when ticks are active.
Since 2011, only 178 cases have been reported in the United States.
way to recovery
Simonon said her son is on the mend, but still has noticeable left-sided deficits. He started a Facebook page so others can follow his journey.
“He seems to have regressed a bit cognitively, but we’re optimistic that his resilience will do him well,” she said.
Simonon is now encouraging others to prevent tick bites and protect their children.
“You’re the only one who knows them and what’s normal for them is to stand up for them if it’s not right,” she said. “Don’t feel like you’re interrogating someone. This is your job.”
Simonon also encourages people to donate blood. During his hospital stay, his son was given five doses of IVIG, a blood product. With each dose, he said, doctors saw consistent improvements.
“We believe it can’t be proven, but we know IVIG was a turning point for Johnny, and if there’s anything we can do to help someone get treatment sooner, that’s really our goal,” he said.