By Katherine Speller

lostlake

Lost Lake in Patterson, New York Photo by Katherine Speller

Maya Slouka was four years old when her parents discovered a large “bullseye” on her back.  She was spending the first of many summers at her family’s lakeside cabin in Lost Lake, New York, a quiet seasonal community in Putnam County,  a Lyme  disease endemic county, right along the edge of the Connecticut border.

Her father grew up in the community, spending his own summers nestled between layers of trees and mazes of dirt roads, so her parents knew how to deal with ticks.

“If you got a tick, you had to get it off in a certain amount of time,” Slouka said. “But, we were kids. We just ran around and played, took ticks off and made sure there was nothing left behind. We didn’t really think about it.”

But the bullseye—a term used to describe the outwardly expanding rash surrounding a tick bite when Borrelia burgdorferi, the bacteria causing Lyme disease, comes into contact with the skin—worried her parents.

“It wasn’t my first bite, but it was the first time I’d had a bite like that and they were scared enough to bring me to the hospital,” Slouka said. “I think I had a 104 fever at that point, flu-like symptoms; I even fainted in a parking lot.”

Slouka, 22, has had Lyme disease four times since then. Each time it started with a similar discovery of the circular rash, followed by the removal of a tick and flu-like symptoms that had her dizzy and in bed instead of playing outside.

According to officials at the Department of Pediatrics at the University of Louisville School of Medicine, there is a clear “intersection between children and tick-borne diseases” like Lyme disease as the “habitats of children and ticks overlap.”

“We all stomped through the woods half-naked and ran around without being afraid,” Slouka said. “It wasn’t the biggest worry.”

Slouka said her parents reminded their kids to check themselves for ticks regularly, to wear high socks and avoid unnecessary traipsing through thicker, less-traveled paths. She said that other families in the community had it worse.

“It definitely scared some parents more than others,” Slouka said.

Slouka said that one of her neighbors, a young family from the New York City area (not unlike her own), actually stopped coming back to the community after a few bad run-ins with ticks. Slouka said it wasn’t uncommon for other kids in her community to come down with a “summer bug” after a weekend of camping or hiking.

“You’d know when a lot of the kids were sick,” Slouka said. “The lake would go silent, there’d be no splashing or screaming or laughing to annoy the old people.”

Slouka said the illness would occasionally bleed into the fall months, keeping her lethargic and on medication long after the initial bite. She said she is thankful she was home-schooled at that point, unsure if she would’ve kept up with the pace of public schools while sick.

“I wasn’t in any condition to do schoolwork during those days and [the symptoms would] last for a while,” Slouka said. “I would’ve been so far behind.”

In a 2002 letter to the New Jersey School Boards Association (NJSBA), Lyme Disease Association (LDA) President Patricia V. Smith said Lyme disease was likely causing the “learning problems” for school children in Lyme-endemic areas.

“Unfortunately, children are at the greatest risk of acquiring the disease, and 10 to 15 percent of Lyme cases become chronic,” Smith said.

Smith said it’s not uncommon for children to exhibit behavioral or mood problems, rooted in their Lyme disease history, that go unnoticed by school districts. Instead they are often misdiagnosed as “neurologically impaired or emotionally disturbed.” [1]

According to a study of children with Lyme disease in New Jersey published by the Center for Disease Control in 1992, the median duration of 64 Lyme disease cases was 363 days with the median school days missed due to illness logged in at 103 days. The study also noted that more than a third of the families in the study had more than one member affected by the disease at the time.

“Perhaps the greatest costs incurred by the study children were the social costs of the illness and its treatment. Schooling and extracurricular learning activities were seriously interrupted for most children,” a comment in the study said.

[1] See Jordan Wilkinson’s story, Pay Attention: It Might Be Lyme.”