LONG ISLAND, NY — What became a desperate search for answers all began with a tick bite.
Tracey Detmer, who lives in Riverhead with her family, said her son, John, 9, is one of three potential cases of tularemia, or "rabbit fever," in Suffolk County, according to the Suffolk County Department of Health Services.
According to the Centers for Disease Control and Prevention, tularemia is a disease that can infect animals and people.
Rabbits, hares, and rodents are especially susceptible and often die in large numbers during outbreaks, the CDC said.
People, the CDC said, can become infected in several ways, including:
In addition, people could be exposed as a result of bioterrorism, the CDC said.
Reflecting on her son's journey, Detmer told Patch that on April 23, a Thursday morning, she found a tick on her son's head; she saved the tick, which she initially believed was a dog tick.
She brought her son to school, but later that night, he told her that his neck was hurting badly. Her first though, Detmer said, was that maybe he'd hurt himself riding on his dirt bike.
Next, however, he told her, "'Mom, I've got a bump,'" she said. "Sure enough, he had a swollen lymph node on the back of his neck."
The following day after school, John was crying, she said. "He said, 'Mom, my neck hurts bad. And I've got two bumps.'"
Over the next few days, he developed a fever and her first thought, Detmer said, was that perhaps her son had come down with the flu.
She brought her son to see a doctor and by that point, he told her he really wasn't feeling well, and that his neck was hurting even more badly; his lymph nodes were swollen, Detmer said.
However, at first glance, Detmer was told that her son's symptoms were probably not tick-related; the tick, in fact, was thrown away.
Rather than doxycycline, which is normally prescribed after any suspicion of a tick-borne illness, her son was given antibiotics, Detmer said.
Over the next few days, John still had a fever; his lymph nodes continued to swell; and he became easily exhausted.
What followed was a series of visits to different physicians, days passing as her son just struggled with symptoms that worsened to the point that one day, he could barely walk.
Still, there had been no diagnosis involving the possibility of ticks, Detmer said; instead, it was believed that perhaps, he had an abscess on his lymph node — a sonogram was performed and new medication, prescribed.
Despite Detmer's suggestion that perhaps, her son's illness might be tick-related, he was sent for the sonogram and the prognosis was an infection, she said.
At that point, she said, her son still had a persistent fever. "He was waking up every morning at 3 a.m" — something, Detmer said, that she learned was often related to Lyme Disease.
"You sit there, and you go down the rabbit hole," she said. "He would wake up, and he would be sweating, and crying, and at one point, he said, 'Please, just stay up with me.'"
Over the next few days, her son had pain in the spot where he'd been bitten by the tick; it was draining, almost like a pimple, she said.
"He couldn't turn his neck at this point," Detmer said.
At that point, Detmer rushed her son to Stony Brook University Hospital, where bloodwork and another sonogram were done.
After a series of tests and then, being told that perhaps John had an infection in the bone behind his ear — ultimately, he and his parents were sent home with a prescription for doxycycline and a follow-up appointment with an infectious disease specialist.
"He was so miserable," she said. "He was so sick."
And then, after 11 long days of pain and uncertainty, his fever broke, Detmer said.
When the infectious disease specialist mentioned tularemia, it still seemed hard to fathom, because "it's like a one-in-a-million" case, she said.
Still on doxycycline, John went back to school but still, he was so weak that finishing up the day was difficult, Detmer said.
"By 11 a.m., I'd be picking him up," she said.
And then, finally, after days of fear and uncertainty — and some difficulty finding a lab that could test for tularemia — he had the test, and by May, the results indicated that her son had tested positive. "I was told, 'Your son has rabbit fever,'" she said. "'He has tularemia.'"
The answer, although so rare, made sense, Detmer said: "We have wild rabbits in our yard 24/7," she said. "There are rabbits everywhere."
Next steps included new medication — one was rejected because it might caused snapped tendons, something that, as a hockey player, her son couldn't take, Detmer said.
And so, John received another round of doxycycline, she said.
But the challenges continued, she said: "He had a relapse," she said. "All of a sudden he started not being able to turn his head again. He went downhill."
Despite the medication, even today, Detmer said, her son is still struggling to recover. On July 4, playing in the pool, he began to cry, asking to go home, she said.
"He can't last, he has no energy," she said. "He's just so tired."
He's no longer on medication and the swelling in his lymph nodes has gone down, "but his stamina is just not there yet," she said.
While he should be savoring summer days out on the boat, or spending time at the farm where his mother also works, her beloved boy is "crying to leave," she said. "He just has no stamina."
When asked what the future holds, Detmer said, "I don't know. They said it's going to take a while. The health department said it could take. a very long time."
As a mother, it's agonizing to see her son suffer, she said. And, while others see him and say, "'Oh, he looks fine,' they don't see the 7 p.m. meltdown," Detmer said. "Where he's exhausted, because it's been a long day, or when he plays soccer and he's in tears because his legs hurt, and he's tired."
It's still difficult to believe, she said, that her son has such a rare illness. "It's like a nightmare, truly. You feel awful. Because there's nothing you can do for him."
According to the CDC, tularemia symptoms can, vary depending how the person was infected. Tularemia can be life-threatening, but most infections can be treated successfully with antibiotics, the CDC said.
Steps to prevent tularemia, according to the CDC, include:
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