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Lyme Disease in Children

How to check for and prevent Lyme disease in children



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We live in one of the epicenters for Lyme disease, the debilitating condition carried by very tiny deer ticks and transmitted to people via bite. No matter how you slice the numbers, Pennsylvania, New Jersey and Delaware are among the most affected states in the country. Southeastern Pennsylvania is the hardest-hit part of the Delaware Valley, with Chester County registering an especially high number of cases. “Everybody knows somebody who has been touched by this disease,” says Doug Fearn, president of the Lyme Disease Association of Southeastern Pennsylvania. Including children with Lyme disease.

“Kids are really high-risk,” Fearn continues. According to Centers of Disease Control and Prevention stats, a quarter of Lyme disease cases across the country are in children younger than 19, with kids 5 to 14 accounting for 19 percent of that number. "It makes sense,” says Fearn. Kids are less likely to be aware of ticks, and they’re closer to the ground where the pests are concentrated.

A family Lyme disease story

The tricky part about Lyme disease is that many sufferers are unaware that they have been bitten. “We had seven incidents of Lyme disease in our family, but we found only two ticks,” says Jane, a Chester County mother of five. Four of her kids have been diagnosed with Lyme disease over the past several years. Every instance, she says, “presented so differently from each other.”

One of Jane's kids was nearly bedridden, while another had to be diagnosed by an orthopedist when no cause could be found for the athletic teen's sudden knee pain and swelling. Only one of Jane's children bore the tell-tale bull's-eye rash (pictured at right) so often associated with Lyme disease, but the mark was hidden on the girl's scalp, under her hair. 

The three stages of Lyme disease 

“It’s safe to say that probably only about half [of Lyme disease sufferers] get the rash,” says Kathy Spreen, DO, the West Chester, PA, author of Compendium of Tick-borne Disease: A Thousand Pearls. When the rash does appear, it is variable and does not always look like a perfect bull’s-eye target. In fact, says Dr. Spreen, a solid maroon oval is a more common presentation.

There are three main stages of Lyme disease, says Abigail F. Freedman MD, a specialist in pediatric infectious diseases at Nemours/Alfred I. duPont Hospital for Children in Wilmington, DE.

Stage 1: Early localized disease occurs within the first one to two weeks after a tick bite. A single bull’s-eye rash at the bite site may — or may not — be accompanied by a few days of fever, head- and body aches.

Stage 2: Early disseminated disease happens about one to three months after the tick bite, a period when Dr. Freedman says the majority of children are diagnosed with Lyme disease. The most common symptoms at this stage are multiple bull’s-eye rashes, which can be widespread over the body, along with fever, fatigue and body and headaches. 

Stage 3: Late disease can develop if the condition remains undiagnosed and untreated, typically for more than three months after the tick bite. The most common symptom of this stage in children is pain and swelling of the joints, usually the knee.

“Lyme disease is a great mimicker,” says Dr. Spreen. As a result, it is often misdiagnosed as other things, such as the flu. Adding to the confusion, testing for Lyme disease is often unreliable and inaccurate.

“Lyme disease is diagnosed by a combination of typical symptoms and blood tests,” says Dr. Freedman. False-negative blood tests can occur within the first 30 days of the tick bite, because it can take a few weeks for the infection to manifest itself. Active research is being done on better diagnostic tests.

Next page: Prevent Lyme disease in children

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