ometimes 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 broke your leg, you were able to walk, to drive, to go up and down stairs. You go to the doctor. He develops a treatment plan - puts a cast on your broken leg, tells you what not to do while it's healing. You get rides to work, maybe use a wheelchair at home, someone else in the house does the laundry, if the washer and dryer are on a different level. You have a long term plan and a short term plan. The long term plan is to get permanently better. The short term plan is for "accommodations." If a child breaks her leg, the same process is put into place -- the doctor establishes the long term plan, by "treating" the broken leg. A note from the doctor, gives the child "accommodations" in
school as part of the short term plan, giving her an elevator pass, having someone carry her books, compensating for her "functional impairments." What's different about Lyme? First, if Lyme is chronic, you probably don't know when
you got sick. Your symptoms crept up on you, until you finally found a doctor who put the puzzle pieces together, diagnosed you, and began treatment. (You know
when you broke your leg!) When you got the Lyme diagnosis, a light bulb probably went off in your head. You remember when you were well. You had years of life experience of health, physical and mental. You know what your brain was like before your first symptom. You want to get back to that point, and that is your goal, restoring health and restoring functioning. For a child, here is the profound complication - she had little or no life experience before Lyme.
One of my clients is in 5th grade. Her doctor speculates that she's had Lyme since the age of 4. What do she and her parents know about her cognitive abilities, her attentional abilities, before
Lyme touched her life? This is the problem for so many kids. They have no baseline
. Having no
memory of a tick bite or a rash, they really don't know when normalcy ended, and Lyme began. Or, even if they do
remember, they were so young when they got bitten that there was no evidence of their abilit