A mom watches her son fight for his life two weeks after he was bitten by a bug at a pool party.
Jamie Simoson knew something was up with her three-year-old son, Johnny, who was “not acting himself”.
His nursery had called to say he didn’t want to eat lunch, and he was mopey and complaining of headaches.
Johnny, from Pennsylvania in the US, was given some medication by the doctor who expected he had a run-of-the-mill virus.
But his symptoms got worse over the next two days and Jamie noticed he was sleeping a lot more than usual and had a fever.
After a second visit to the doctor, Jamie took her son to the ER as his fever spiked above 104F (40C).
Jamie told Today: “At this point, I’m falling apart at the seams.
“I was adamant every single time we talked to someone that he was bitten by a tick… but he was negative for Lyme disease.”
Two weeks prior, on June 15, Jamie had noticed a tick on Johnny’s shoulder while they were at a neighbour’s pool party.
The tick was tiny and hadn’t embedded into the skin yet.
Jamie told the New York Post: “It was not engorged. I easily removed it with a pair of tweezers, and it was still alive.
“He didn’t necessarily have any marks on his back shoulder until a few days later; there was just a tiny red bump. That was it.”
The family live in a wooded area and are familiar with ticks and their dangers.
Ticks can carry viruses, namely Lyme disease, which Johnny’s sister tested positive for in 2019.
But, with a negative result himself, Johnny had to have various tests to figure out what was wrong.
His white blood cell count was three times higher than normal, indicating infection.
Johnny was admitted on July 1 and deteriorated, with Jamie recalling he became floppy in her arms. He was transferred to a children’s hospital where his heart rate slowed.
Jamie said: “When they took him for the CT scan, we absolutely did not think that we were coming back with our son.”
The CT scan showed that Johnny had encephalitis (inflammation of the brain) and meningitis (inflammation of the membranes that surround the brain and spinal cord).
But at the time, doctors were still unsure why.
They were able to start treatment and Johnny remained in hospital until July 12.
And days later, it was eventually discovered that Johnny had been bitten by a tick infected with Powassan virus – which is incredibly rare.
The virus can spread from the tick to person within 15 minutes, which is much quicker than other infections.
Around ten per cent of Powassan virus cases that lead to encephalitis are fatal.
Powassan virus infections, according to the Centers for Disease Control and Prevention, have been found in the US, Canada, and Russia.
In the US, 178 cases of Powassan have been reported since 2011, primarily in the northeastern states and the Great Lakes region.
It is thought that many more people catch the virus but are unaware, due to showing only mild symptoms.
Powassan virus has not been detected in the UK. But people are warned that ticks -some of them carrying Lyme disease – live in forests and grassy areas of the UK.
Recalling when Johnny got his diagnosis, Jamie said: “I called my husband and said, ‘You’ve got to be kidding me. The whole time it was that stupid little tick. I knew it’.
“I Googled it and I was like, what the heck is this? What are the chances?”
Johnny has still not fully recovered from his ordeal, as half of survivors have permanent neurological symptoms, according to New York Department of Health.
At first, Johnny was unable to walk or balance, and had signs of brain damage. His parents had to help him eat and sit up.
He has improved greatly since but still struggles with speech and the left side of his body is weaker.
Jamie said: “He appears to have regressed a bit cognitively, but we are optimistic that his resilience will see him through.
“His doctor said his brain was injured, it has to heal and that affects everything.”
She warned other parents to push for answers when their instinct tells them there is something more sinister going on.
She said: “Advocate for your kids. If you feel like something is not right, you need to push for answers.
“The first time we saw the paediatrician, they said it’s viral… it’s got to run its course. Luckily for Jonathan, we were adamant that something else was wrong.”