A baby from the USA fell ill with cerebral meningoencephalitis from a tick bite

That was all it took to transmit a rare, dangerous, and debilitating tick-borne illness to a vigorous, witty, and otherwise healthy three-year-old boy from the United States, seriously ill.

Jamie Simoson’s maternal intuition spurred her into further treatment for something that her youngest son’s pediatrician assured her was a virus that was supposed to go away on its own. in New York Post reports.

However, she later learned that it required weeks of medical attention and could have lifelong consequences.

Johnny Simoson of Pennsylvania was swimming in a nearby pool on June 15 when his mom noticed a small blemish on his right shoulder blade. It was a tick less than a pen point.

“He wasn’t embedded. He wasn’t filled. I removed him easily with tweezers and he was still alive,” Ms Simoson said. “He didn’t necessarily have any marks on his back shoulder until a few days later, there was only a tiny red bump, that’s all.”

About two weeks later, Johnny’s kindergarten called and said he wasn’t feeling well.

“He was lethargic, he had no appetite, and the fact that he complained of a headache was not normal for a three-year-old child,” Ms Simoson said.

Just that morning, his mother said he was eating breakfast, playing with water pistols, and having a great time.

His symptoms worsened over the next two days. After a visit to the pediatrician, Johnny was sent home with some supportive medication. That night he woke up with a fever.

“The next morning we called the doctor and I said that he sleeps a lot and it really doesn’t look like him,” Ms Simoson said.

After the second visit to the doctor, she took her son to the emergency room as his temperature had risen above 104 degrees (40°C). He also showed no reaction to the Tylenol suppository, which was not normal for a normally exuberant boy.

Days in the hospital turned into weeks. The elevated white blood cell count increased to 30,000. He was unusually sleepy and showed no signs of improvement after intravenous fluids.

A lumbar puncture showed that he had an increased number of neutrophils, a type of white blood cell that act as the immune system’s first responders, in his cord fluid. He was treated for bacterial and viral meningitis until doctors ruled them out.

Johnny was transferred to a specialized children’s hospital, where he spent four days in the pediatric intensive care unit, where he underwent a CT scan of the coronary arteries to rule out a cerebral hemorrhage, abscess, or neoplasm. All this was excluded.

“At that moment, it became really scary,” Ms. Simoson said. “It was so frustrating to look for an answer. We were afraid that we might not return home with the child.”

However, after an MRI, neurologists were able to diagnose him with meningoencephalitis, an infection of both the brain and the delicate tissues that surround it. After a night of intravenous immunoglobulin, treating antibody-deficient patients, there were signs of hope.

Ms Simoson believes IVIG has played a pivotal role in her son’s life.

“15 hours after his first dose, I heard: “Mom, is this pepperoni pizza?” she recalls.

In fact, it was just a box of tissues. To Johnny, however, it was like a pizza box, and that’s all the kid wanted – a piece of cake.

“So we started asking him questions to try and assess his cognitive abilities at this point,” Ms Simoson said.

After nearly five full days of inactivity, her son was conscious and speaking.

“It was amazing. It was the first time since this whole situation started that my husband and I just completely broke down,” she said confidently, finally knowing that their little boy would be heading home soon.

There was light at the end of the tunnel for Johnny, but the price of isolation was devastating.

“Isolation is hard on the baby,” Ms Simoson said. “He became delirious in the intensive care unit and by the time he was released from isolation, he didn’t want to go back to the ward.”

His parents had to re-teach him how to eat and drink, as well as how to sit and speak clearly.

“We discussed inpatient rehabilitation with PT/OT but found that paperwork would delay our discharge by another three days,” Ms Simoson said.

They agreed that they could take him home and look for outpatient services.

“We knew it would be hard to go home,” Ms Simoson said. “He is active and does not understand his limitations. We were so excited to get out of the hospital, but so afraid of what would happen next.”

After 12 days, Johnny was finally discharged.

“Johnny was still unable to walk and his balance was poor,” Ms Simoson said. “We knew we had a lot of work to do, but we were ready to take on the challenge.”

Three days after being discharged, Johnny tested positive for the Powassan virus, a rare and dangerous tick-borne disease, according to Ms Simoson.

According to the Centers for Disease Control and Prevention, human infection with the Powassan virus has been detected in the United States, Canada, and Russia.

In the US, cases of Powassan have been reported primarily in the northeastern states and the Great Lakes region. These cases occur mainly in late spring, early summer and mid-autumn, when ticks are most active.

Since 2011, only 178 cases have been reported in the US.

Ms. Simoson said that her son is recovering, but he still has noticeable left-sided impairment. She set up a Facebook page so others can follow her journey.

“He seems to have regressed a bit cognitively, but we hope his resilience will help him get through it,” she said.

Ms. Simoson now encourages others to prevent tick bites and protect their children.

“You’re the only one who knows them and what’s normal for them, and if you don’t think it’s right, protect them,” she said. “Don’t think that you are interrogating someone. This is your job.”

Ms. Simoson also encourages people to donate blood. Her son received five doses of IVIG, a blood product, during his hospital stay. Doctors saw consistent improvements with each dose, she said.

“We’re sure it’s impossible to prove, but deep down we know IVIG was a turning point for Johnny, and if there’s anything we can do to help someone else get that kind of treatment quickly, that’s really our goal,” – she said.

This article originally appeared on New York Post and reproduced with permission

Originally published as Toddler contracted rare disease from tick bites