Navigating school accommodations for children with Lyme disease is crucial. Learn how to prevent Lyme, spot symptoms, and secure necessary school support.
Lyme disease is a serious bacterial infection caused by the bite of an infected black-legged tick. Of the 476,000 people diagnosed and treated each year, the population at greatest risk for Lyme disease is children ages 3-14. Children are lower to the ground and love to play where ticks love to live: in long grasses on playgrounds or athletic fields, in shrubs and leaf piles, in beach dunes, in the woods.
Parents of school-age children should take special care to prevent them from getting tick bites. If a child does get a tick bite, there are specific signs of Lyme disease in children to look for. If your child is diagnosed with Lyme or other tick-borne disease, they may need certain accommodations at school.
Preventing Lyme Disease
The best way to prevent Lyme and other tick-borne disease is to Be Tick AWARE:
Avoid areas where ticks live like wood piles, leaf litter, long grass, beach grass, bushy areas, stone walls, and perimeters where the lawn meets the woods. Children are less likely to avoid these areas, but you can make them aware of the risks and encourage them to play in safer spots such as sunny areas on the lawn or the middle of paths in the woods.
Wear light-colored clothing to spot ticks more easily, long-sleeved shirt tucked in at the waist, long pants tucked into high socks, closed-toed shoes, and a hat with hair tucked in. Do not walk in the grass barefoot or in open sandals, even if it’s a shortcut.
Apply EPA-approved tick repellent (such as picaridin or DEET) before your child goes out to play. Apply insecticide (such as permethrin) to clothing and shoes as directed. You can treat your child’s clothes yourself, or you might want to send their commonly worn gear (like athletic or camp uniform) to a company to have them pre-treated.
Remove clothing upon entering the home and toss into dryer on high heat for 10-15 minutes to kill live ticks (washing won’t do it).
Examine your child for ticks daily. Feel for bumps, paying close attention to warm, moist places like the back of the knees, the groin, the armpits, in and behind the ears, the bellybutton, and the scalp. You can inspect young children in the bath, and older children can examine themselves while showering.
How Does Lyme Disease Affect Children?
Ticks are small and their bites do not hurt or itch, so most children aren’t aware they’ve been bitten by a tick. Symptoms of Lyme disease to watch for, which can appear days to months after a tick bite, include[i][ii]:
- Erythema Migrans (EM) rash, which is sometimes, but not always, shaped like a bullseye; it may be mistaken for cellulitis ringworm. Not everyone with Lyme disease gets a rash.
- Fatigue, malaise, and other flu-like symptoms
- Aches
- Chills or fever
- Facial palsy
- Headache/meningitis
- Fainting
- Joint pain/arthritis (particularly in the knee)
- Cardiac symptoms
For a full list of possible Lyme disease symptoms in the different stages of Lyme disease, see GLA’s Lyme Disease Symptoms page.
Lyme Disease and School
Children with Lyme disease often struggle with multiple facets of school, including academic and social. They may have difficulty concentrating, experience brain fog or other cognitive symptoms like mixing up words or letters, forget assignments or deadlines, feel sleepy in class, and be too tired to play at recess or engage with peers. In addition to malaise, they might have headaches, inappropriate outbursts, frustration, or rage.[iii]
Children whose Lyme disease is diagnosed and treated right away may only have symptoms for a few weeks. But if symptoms progress, if their case is complicated by co-infections, or if they were diagnosed at a later stage of disease, they may suffer longer. This is when you may need to reach out to the school for accommodations. Here’s some information you should know:
Support is mandated
The National Institutes of Health (NIH) has chronic illness guidelines for families, schools, and students. These guidelines note student and family responsibilities but also school and school district responsibilities in ensuring students with chronic illness receive comprehensive support, equal educational opportunities, and a safe learning environment. You may want to reference the guidelines when asking for support at your child’s school.
In addition to these guidelines, there are also laws that require schools to help children with disabilities. The Individuals with Disabilities Education Act (IDEA) is a federal law that requires schools to provide special education and related services to eligible children with disabilities. Children with chronic illness may qualify for accommodations under this law.
The Americans with Disabilities Act (ADA) prohibits discrimination against individuals with disabilities in all areas of public life, including schools. This law mandates that schools provide reasonable accommodations to students with disabilities, including those with chronic illnesses, to ensure they have equal opportunities.
Accommodations are possible
If a child’s chronic illness significantly impacts their ability to learn and requires specialized instruction, parents can work with the school to develop an Individualized Education Program (IEP). An IEP outlines specific education goals, services, and accommodations tailored to the child’s needs.
Less formal than an IEP is a 504 Plan. Based on Section 504 of the Rehabilitation Act of 1973 which outlines the responsibilities of educational institutions in identifying accommodations for students with hidden disabilities, a 504 Plan provides accommodations and modifications to meet the individual needs of a child with a disability, include chronic illness.
Medical documentation from healthcare professionals outlining the child’s diagnosis, treatment plan, and necessary accommodations can support requests for accommodations.
Communication and collaboration are key
Whether requesting formal accommodations or simply discussing your child’s Lyme disease with their teacher, open communication between parents, teachers, and other school staff (including but not limited to administrators, social workers or guidance counselors, school health care services or nurses, and coaches) is crucial for identifying and implementing appropriate accommodations. Parents should advocate for their child’s needs and work collaboratively with school staff to develop effective strategies.
Additional Support
Having a child with Lyme disease isn’t easy, but you don’t need to go it alone. Connecting with other parents of children with Lyme or chronic illnesses, as well as with advocacy organizations, can provide valuable support, resources, and guidance for navigating the educational system and obtaining accommodations for your child.
[i] https://www.childrenshospital.org/conditions/lyme-disease
[ii] https://www.globallymealliance.org/about-lyme/diagnosis/symptoms/
[iii] https://www.globallymealliance.org/blog/school-related-difficulties-lyme-disease
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