d joint pain, as part of a Jarisch Herxheimer reaction to the antibiotics, a reaction in which the symptoms temporarily get worse. Thus began Jim's long struggle with what turned out to be chronic Lyme disease. Jim went from being a teenager who could not attend school, could not participate at all in the educational process, was failing all tests, to a good student at one of the best colleges in the New York State system. He went from being a very sick kid, who was on homebound instruction for a year and a half, to a college graduate. He was helped by a supportive family, a Lyme-literate doctor, who treated him effectively, a school administrator who accepted the fact that he was, indeed, ill, and a school system that provided accommodations, to help him succeed.
Most of you know that Lyme disease is a multi-system illness. Someone with Lyme can have joint pains, heart problems, stomach problems, any kind of physical manifestation. I'd like to focus this evening on the neurological and neuropsychiatric problems, the ones that have the greatest effect on learning, and the ones that lead to the greatest misunderstandings between parents and school professionals. Most common with children and adolescents who have chronic Lyme are intense headaches that can last for days, cognitive, attentional and mood problems, profound fatigue, and difficulty sleeping. Many kids have problems with vision, or visual and auditory overstimulation. Some have a sensitivity to flourescent lighting. Some of these symptoms may be very subtle, so it is difficult for the teachers to realize that they are dealing with a sick child, rather than a child who is daydreaming, or simply trying to avoid his school work. Once a child has been diagnosed, and is undergoing treatment, there are problems produced by the treatment itself. High doses of antibiotics and other medications the child may be taking can produce gastointestinal problems. The child may be uncomfortable, and complaining a lot, particularly of stomach aches. Since young children sometimes complain of stomach aches to avoid academic projects (I remember my stomach hurting in 3rd grade every time I had to speak
in front of the class), it's hard for teachers to discern whether the problem is avoidant behavior, or the result of illness. Another problem, of course, is the flare of the symptoms when the Lyme spirochetes are being killed off by the antibiotics. A teacher who doesn't know much about Lyme disease has a difficult time realizing that with this illness, once the medication is started, the child will periodically feel wrose, and have more, rather than fewer, symptoms. My sister-in-law used to say to me, during my Lyme treatment, when I told her how bad I felt - "Oh, that's right - worse is better", but that's a hard concept for people who are not personally affected by Lyme to grasp. Other problems include the frequent need for medications (sometimes at school), the fatigue caused by the illness itself, or as a result of the lack of sleep, the demand on the child's time for long car trips to doctors who are Lyme specialists (some kids are even travelling to New Haven, CT, a 4 hour round trip). Another big problem can be that these very sick kids don't look sick
. The extent of the child's illness is not reflected in what the teacher sees.
Another, and very important, way to look at kids with chronic Lyme is to look past their symptoms at their functional impairments. It's the functional impairments that give us the language necessary to figure out what these kids need in school
. If you have a medical problem, you ask yourself and your doctor two questions: 1. What do I need to do to get better, to get well? (This question addresses how to get your health back completely, or as completely as possible) 2. What do I need to do in the meantime, to compensate for my current functional impairments?
(This addresses what in school jargon amounts to "accommodations", enabling you to function on the best level you can, hopefully the need will only be short term.)
You break your leg. Before you