Three-year-old Jonathan Simonson, of Pennsylvania, contracted Powassan virus from a tick bite in June. In the following first-person account, his mother describes what happened next.

By Jamie Simoson

Oh June 15, Jonny was swimming in a neighbor’s pool when I noticed a small speck on his right shoulder blade. A tick. It was smaller than a pen point, not embedded or engorged. I removed it easily.

On June 28th, our daycare director called to say that Jonny was not himself. He was mopey, had no appetite and was complaining about a headache.  It was really all of a sudden. That morning, he had been eating breakfast, playing with water guns and engaging in normal play.

Over the next two days, we noticed his symptoms got worse. We visited our pediatrician twice and were assured it was “viral and needed to run its course.” They sent us home with some supportive medicines.

We did not agree and took Jonny straight to the ER after the second visit. He had a fever of 104.3, threw up in the office and did not flinch when given a Tylenol suppository. We knew this was completely abnormal for our rambunctious little man!

Day 1: Admission

After blood work and some initial screenings, Jonny was admitted because his white blood cell count was 30k and he was not “perking up” after a few hours on IV fluids. We talked about potential “more invasive” testing, but the doctor wanted to see if any additional symptoms developed overnight.

Day 2: Lumbar puncture

The next day, a lumbar puncture (spinal tap) found that he had increased neutrophils in his spinal cord fluid. We were told that the numbers were not consistent with bacterial meningitis, so they were leaning toward viral meningitis, but he was being treated for both until they were ruled out.

Day 3: Transfer

By day 3, Jonny was still unresponsive and did not appear to be responding to the IV treatments. The doctor began to talk to us about the need for an MRI to further diagnose his condition. Because Jonny was not responsive, we decided to have him transferred to a specialty children’s hospital.

We arrived at the new hospital and were admitted to the pediatric floor. All of a sudden, several nurses and doctors were in the room. They also had cell phones and seemed to be texting other associates/doctors.

Within 30 minutes, we were transferred to Pediatric Intensive Care and discussing a CT-STAT [a coronary CT scan] to rule out things like a brain bleed, abscess and mass.  Luckily, the scan didn’t show any of those things.

Day 4:

We continued down the path of MRI to further diagnose Jonny’s condition. By this time, my husband and I had been wearing the same clothes for days and opted to leave the hospital after taking him down to be prepped for anesthesia. We waited until he was prepped, ready and out before heading to a local Walmart to buy some necessities. On the way back from the store, I received an alert that the MRI results had been posted in our online chart.

“Abnormal patchy and confluent T2/FLAIR hyperintense signal throughout the basal ganglia and periventricular, subcortical, and deep white matter with diffuse supratentorial leptomeningeal enhancement.”

Jonny had been gone for about 2.5 hours before he was brought back to PICU and the neurologist came to talk to us.

The neurologist and the attending doctor said we were dealing with meningoencephalitis [inflammation of the brain and surrounding tissues, usually caused by infection]. There was still some question if it was viral, bacterial (CSF was positive for klebsiala but potentially a “red herring”) or autoimmune, as the pattern was potentially consistent with ADEM [acute disseminated encephalomyelitis].

That night would be Jonny’s first dose of IVIG [intravenous immunoglobulin, a treatment for patients with antibody deficiencies].

Day 5: Pepperoni Pizza

We believe that IVIG made all the difference for Jonny. Within 15 hours of his first dose (started at midnight), I heard “Mommy, is that pepperoni pizza?”

Imagine our surprise and delight to find our 3 year old alert and talking, after almost five full days of unresponsiveness. At this point, we both broke down, finally confident that our little boy would be coming home with us.

Day 6: Graduation Day

On day 6, we “graduated” and were transferred from PICU to the regular pediatric floor. We knew our road to recovery would be long at this point, but the days between graduation and discharge were SO SO hard.

I haven’t mentioned that we had also been in isolation since admission, because Jonny had tested positive for rhino-enterovirus. Jonny began to wake up slowly and remain awake over the next five days.

Isolation is hard on a toddler; he started having ICU delirium and by the time he was allowed out of isolation (Day 11), he did not want to go back to the room. Our arms started to feel like Jello at that point!

My husband and I had worked so hard with him over those days to teach him how to eat/drink again, sit up and speak clearly. We had discussed inpatient rehabilitation with PT/OT, but found that the paperwork would delay our discharge by up to three more days.

Jonny just couldn’t handle being in the hospital that long. We all agreed that taking him home and searching for outpatient services was acceptable.

Day 12: Discharge

Discharge day was exciting, scary and overwhelming. Jonathan was still not waking, and his balance was poor. We knew we had a ton of work to do but were up for the challenge.

Just finding outpatient rehabilitation for pediatric patients was a job in itself. We identified a facility that is about an hour drive each way. This place was willing to move him ahead of the waiting list due to the urgency in his case.

Three days after we were discharged, we were told that Jonathan tested positive for Powassan virus. Powassan is a rare and dangerous tick-borne disease.

Jonathan is recovering quickly but still has some noticeable left-side deficiencies. He appears to have regressed a bit cognitively, but we are optimistic that his resilience will see him through.

We are incredibly fortunate that Jonathan is at home and recovering. The tick we found was tiny, not embedded and we are now told that it only had to be attached for 15 minutes to transmit this debilitating disease.

Our message to you:

—Do what you can to prevent tick-bites.

—Trust your gut- you know your child best. Advocate for them!

—Donate Blood. IVIG is a blood product and although it cannot be proven, we believe this is what changed the outcome for Jonathan. He had five doses of IVIG over the course of his hospital stay. With each dose, we saw consistent improvements.

Jamie Simoson recently relayed much of this story to the federal Tick-Borne Disease Working Group.

News coverage of Jonny’s ordeal from PAhomepage.com: