HARVEY’S LAKE, Pa. – Fifteen minutes.
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.
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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 wasn’t embedded. It wasn’t engorged. I pulled it out easily with tweezers and it was still alive,” Simoson said. “He definitely didn’t have any spots on his back after a few days; just a little red bump. That’s it.”
About two weeks later, Johnny’s daycare called to say he wasn’t feeling well.
“He was mopey, he 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.
THE SEASON IS IN FULL
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.
– We were afraid that we will not come home with our child.
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 we wouldn’t be able to come home with our baby.”
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’s been amazing. For the first time since the situation started, my husband and I have both broken down,” she said with confidence that their little boy will finally be heading home soon.
A NEW REASON TO FEAR TICKS: A SPECIFIC FOOD ALLERGY IS POSSIBLE
There was light at the end of the tunnel for Johnny, but the isolation was devastating.
“It’s hard for a child to be isolated,” 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 release 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’re excited to be out of the hospital, but we’re scared of what’s 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 see him through,” he said.
THESE ARE HUNTS FOR YOU EVERY SEASON
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 you don’t feel right,” she said. – Don’t feel like you’re interrogating someone, that’s 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 deep down that IVIG was a turning point for Johnny, and if there’s anything we can do to help someone get that treatment sooner, that’s really our goal,” he said.
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