The 9-year-old, diagnosed five years ago with Lyme disease, would get so distracted she’d forget why she entered a room. She struggled with math and complained about pain in strange places, such as the tops and bottoms of her feet, her mother, Brianna Seppala, said.
Ali’s health picture became clearer after a new round of tick-borne disease testing in the past few months showed she had babesiosis and a bartonella infection, Seppala said.
And, like Lyme disease, those illnesses can cause neurological problems including brain fog, memory issues and mood swings, according to tick-borne disease experts.
“I never knew those were the signs and symptoms” of tick-borne disease, said Seppala, who, like many parents, initially was more concerned with the physical aches and pains that plagued her child.
With statistics showing that children age 5 to 9 are particularly susceptible to Lyme disease, tick-borne disease experts say parents and school officials should be aware that diseases transmitted to children by deer ticks can show up during the school year as fatigue, depression, irritability, distraction and other issues.
“School nurses and teachers can play a really important role when recognizing kids might be ill,” said Dr. Sheila Statlender, clinical psychologist in Newton and member of Massachusetts Lyme Legislative Task Force.
Often problems associated with tick-borne diseases are assumed to be attention-deficit/hyperactivity disorder or an innate learning disorder, when it is actually disease-acquired, Statlender said.
“There are a lot of visual processing problems in some kids. Problems with lining up numbers or scanning errors. It’s very variable,” Statlender said.
Statlender’s own son had such bad auditory processing problems with Lyme the family feared he was losing his hearing — and teachers thought he just wasn’t paying attention, Statlender said. She said his problems cleared up with antibiotic treatment.
“Check and see if there’s anything else going on. Are the kids complaining of joint pain. Are they getting more tired,” Statlender said. “Just try to get a sense of the fuller picture.”
Deirdre Arvidson, Barnstable County public health nurse, said she understands school nurses and teachers are not in the position to make a diagnosis.
“I just want somebody to have the knowledge to ask, ‘Has the child been tested for Lyme disease?’” Arvidson said. “It can affect learning. Does the child have a history of tick bites?”
New Jersey has a law that requires training in Lyme complications for teachers of children with a Lyme disease diagnosis.
Arvidson said she also has a program for teachers about what a tick-borne disease process might look like in a student, but only about four schools have asked her to do the free presentation in the past three years, Arvidson said.
Far more popular is a program she does for schoolchildren — mainly in the elementary grades — on tick awareness and disease prevention, Arvidson said. She said she has done the presentation for thousands of schoolchildren.
Barnstable County has one of the highest incidence rates of Lyme disease in the state, with the state Department of Public Health reporting 264 confirmed and probable cases in 2014, the last year for which it has statistics.
And the incidence rate across the state was highest in the age 5-9 group, with age groups 10-14 and 65-74 following close behind.
Those age groups remain the most susceptible year after year, said Barnstable County entomologist Larry Dapsis, who presents Lyme-prevention programs and urges parents to treat their pets and the perimeters of their lawns and to invest in permethrin-treated clothing or sprays for clothing for their children.
According to the state DPH, most cases of Lyme disease occur during the months of June and July — but cases are diagnosed in every calendar month.
Brianna Seppala said her daughter Ali has been a “tick magnet” since she was little, unlike Ali’s twin sister, Elise.
Diagnosed with Lyme disease at age 4, Ali was treated for 30 days with amoxicillin after coming down with a multiday fever, Brianna Seppala said.
But as the child grew older and continued to complain of pains and aches, the family took her to Entire Health and Wellness in Mashpee, where Ali was found to have babesiosis and a bartonella infection, Brianna Seppala said.
Now, in addition to treating Ali with physician-prescribed antibiotics, Brianna Sepplala said she is working with Ali’s fourth-grade teacher on accommodations that could minimize classroom distractions, such as the possibility of having Ali take tests in a quiet hallway.
“She loves school,” Brianna Seppala said.
Cape Cod Community College freshman Marissa Freeman of Brewster, 19, said medical treatment and special accommodations at Nauset Regional High School allowed her to graduate with scholarships and awards after Lyme disease wreaked havoc with her learning process.
Freeman said she would try to get to sleep by 8 or 8:30 p.m. to combat the fatigue that accompanied Lyme.
Her mother, Lisa Freeman, said specialized treatment from a doctor in Connecticut and help from Nauset Regional High School officials helped Marissa achieve her goals.
Lisa Freeman said Nauset Regional High School officials gave Marissa time and a half for tests in a quiet room and gave her books on tape because she absorbed information better that way.
“They were wonderful to her,” Lisa Freeman said.
Nauset Regional High School Special Education Department chairwoman Christine DeSimone said she couldn’t help but sympathize with Marissa Freeman since she herself had struggled with Lyme disease.
“I couldn’t do my checking account when my symptoms were active,” said DeSimone, who said treatment helped her mental faculties improve to a point where she feels higher-functioning than before she got sick.
Schools can help Lyme patients by putting them on IEPs or 504 plans that allow call for extra help or educational accommodations, DeSimone said.
In some cases, students recovering from tick-borne illness might require a tutor or to ease back into classes on part-time, as would be the case with a student who suffered a concussion, DeSimone said.
It depends on what physicians say, DeSimone said.
Brianna Seppala said that while Lyme specialists understand what children go through, the maintstream medical community needs a better understanding of tick-borne illness.
“I just don’t think there’s a whole lot of knowledge out there,” she said.