In 1975, Peggy Murray noticed her children, and others in her Lyme, Connecticut neighborhood, were plagued with flu-like symptoms, rashes and swollen knees. She notified her state health department and thus began the investigation leading to the identification of Lyme disease.
By 1991, improved understanding of Lyme disease led Assemblywoman Marlene Ford (now a Superior Court judge in Ocean County) and Assemblyman John Doyle to successfully steer legislation creating education laws which require public school districts to develop curriculum guidelines about prevention, as well as how to address the needs of students (the word in the legislation is “victims”) struggling with Lyme disease.
The legislation requires that the education commissioner periodically review and update the guidelines to ensure that curriculum reflects the most current information available. But 25 years out, what does the “current information” look like and what knowledge do board members need in order to ask good questions?
A Personal Experience with Tick-Borne Disease In the interest of full disclosure, I come to this task having been on a medical journey with my youngest daughter. In 2008, while volunteering as an apprentice bird bander in central New Jersey, she was bitten on the abdomen by two ticks. She removed the ticks and never developed a bull’s eye rash – the indicator many physicians look for. She was treated for Lyme disease, but the two ticks delivered more than one infection. In fact, they delivered three.
The Lyme disease bacteria (Borellia burgdorferi) is transmitted by black-legged ticks (Ixodes scapularis), commonly known as deer ticks. But the bite of a black-legged tick can also carry Bartonella bacteria and protozoa called Babesia.
There are other tick-borne diseases, such as Rocky Mountain spotted fever, and borrelia miyamotoi. Some of the diseases are fairly restricted to certain geographic areas; others are more widespread.
Most bacteria, like Lyme, live and grow within the body. Bartonella, on the other hand, crosses the cell wall and resides inside red blood cells. Babesia, a parasite, also likes to live in red blood cells causing a malarial-like illness known as babesiosis. Former New Jersey First Lady Jean Byrne died from Babesioisis in August 2015.
Symptoms of these infections look like many other illnesses; getting a clear diagnosis is a challenge, even if someone has known tick bites. A treatment schism exists in the medical community complicating matters. One faction of doctors argues for a two-to-three week course of antibiotics. Any residual symptoms must be a different illness. Other doctors say short antibiotic treatments may not be enough. Lyme and Bartonella tests are unreliable, so treating doctors have to be mindful that infections might not be easily eradicated. And the potential consequences for children are severe and potentially long lasting.
Dr. Daniel Cameron, a physician who treats tick infections, addressed the long-term issues children face in a 2010 journal article titled, “Proof That Chronic Lyme Exists.”
“There is also an urgent need to address the mixed long-term outcome in children,” states Cameron. “Some 11 percent of children with facial nerve palsy had persistent facial nerve palsy causing dysfunctional and cosmetic problems at a six-month follow-up. On follow-up, 14 percent of 86 children had neurocognitive symptoms associated with or after classic manifestations of Lyme disease. Five of these children developed behavioral changes, forgetfulness, declining school performance, headache or fatigue and in two cases a partial complex seizure disorder. Children with prior cranial nerve palsy have significantly more behavioral changes (16% vs. 2%), arthralgias and myalgias (21% vs. 5%), and memory problems (8% vs. 1%) an average of four years after treatment compared to controls.”
Trying to parse what symptoms are caused by Lyme and what are caused by other infectious agents is difficult. Doctors still tend to call everything Lyme even if Bartonella or Babesia is involved. My own daughter fell ill a year before she was to start high school. The infections caused brain fog, memory lapses, dizziness (to the point of near fainting), fatigue, malaise, motion sickness, joint pain and rashes befuddling dermatologists. Her eyes took the brunt of the infections and she still cannot track text for long periods of time. She was a voracious reader and grieves this loss the most. She never went to high school and is still in treatment. She’s better, but still displays some symptoms of the disease.
While tick-borne diseases aren’t common – in 2014, according to the state Department of Health, there were 3,286 cases of Lyme disease and 169 cases of babesiosis – the effects can be significant enough that as parents and board members, we should be aware of these illnesses.
So where does this leave us as board members?
The NJSBA issued this policy position:
The NJSBA believes that efforts to educate students, school staff and the general public about the prevention, recognition and treatment of Lyme Disease should be encouraged and appropriately funded.
State law indicates guidelines should be issued from the New Jersey Commissioner of Education outlining professional development on how teachers need to recognize and accommodate the needs of students with tick borne infections.
First, we need to review those guidelines from the commissioner in conjunction with our superintendents. Have they been updated? Do they reflect the current thinking?
Board members need to understand, the treatment of tick-borne infections is a dynamic situation. There is no one accepted treatment protocol. Tests for these infections are still being developed and refined. If families seem to be physician shopping, or using alternative approaches, it is possible students are still ill and have been dismissed as fakers by many physicians. My own daughter heard many times she was feigning. One doctor told her he would recommend we take her to a psychiatrist; and some students have been committed to psychiatric facilities when they actually had infections.
Boards should consider disseminating prevention protocols to employees, students and the community. Ticks have three developmental cycles: larvae, nymph and adult. Nymphs are the size of poppy seeds and easily missed. The correct way to remove a tick, for example, involves grabbing it by the head with tweezers and pulling straight up. Squeezing the tick body causes pathogens to enter the system. Ticks need to be disposed of in sealed plastic bags. Drying clothing in a hot dryer before washing kills ticks. A July 2015 article in Consumer Reports listed the most effective repellents to use against ticks.
In recent years, many campers and outdoor workers have chosen to wear clothing impregnated with Permethrin, an insecticide that also repels other insects. (Permethrin is not recommended for spraying directly on the skin.) Tucking pants into socks and shirts into pants limit access to ticks. Some field biologists actually wrap duct tape around their thighs, inside out, so the ticks get caught on the tape.
From a facilities perspective, school grounds should be regularly mowed and tree branches hanging over play areas trimmed back. Ticks like tall grass. Any Japanese barberry should be removed. Grounds staff should take precautions and learn tick removal protocols.
In terms of special education, students may need, and parents may request, 504 plans and in some cases IEPs. Some children become so debilitated by tick infections they end up in wheelchairs or become bedridden. These students often present as if they are suffering from concussions. But while concussions heal, tick infections worsen.
When approving field trips, especially to outdoor venues like parks or wooded areas, board members will want to ask staff about plans to address potential tick exposure. Staff should encourage students to conduct tick checks after the trip; students should be instructed to put clothes in the dryer before washing and conduct another tick check; leaders should carry tick removal kits. Some physicians contend ticks have to be attached for 36 hours in order to infect people. The two ticks my daughter removed were attached for less than eight hours.
School athletes, especially cross-country runners, need the same instruction. Coaches and trainers should show athletes how to conduct tick checks and remove ticks appropriately.
Clearly board members don’t want to panic students, teachers and other staff members. People can’t live germ-free lives, but everyone can take precautions. As I write, I am reminded of the four months I lived in New Zealand where my daughters attended school. Every child had to have a sun hat and suntan lotion in their cubbies for outdoor play. Ticks, along with mosquitoes and fleas may cause future boards of education to encourage students to have repellents.
Fortunately, hope glimmers and teachable moments abound. Peggy Murray, the Lyme Connecticut mom, saw her son become a physician. He still has occasional symptoms from his Lyme exposure, but it didn’t prevent him from going to school, getting married and having a family.
I tell my daughter there is no timeline for learning; it is lifelong. Someday, she too will emerge from these ravaging infections to live a full life. As board members we get to help ensure that other students won’t face the same struggles.