 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 ability to do schoolwork and to concentrate before the illness began. It's not clear to them how competent they would have been had they not gotten Lyme disease. It's a very puzzling picture for these children, and hard for them to be self-confident, in the face of this illness.
Now, let's look at some of the FUNCTIONAL IMPAIRMENTS in children and
adolescents who have chronic Lyme disease?
One can see functional impairments at home, in school, and among the peer group. The child's
physical problems, unpredictability of symptoms, and feelings of helplessness can lead, IN SOME
KIDS, to a self-focused view of life, understandable given what these kids are trying to cope with.
I'd like to show you a slide that I used in a presentation at a Lyme Disease Association medical
conference. It highlights what some of the functional impairments are, and points to how the
school can help.
In this chart (See Slide #1)
I give an example of some of the common impairments we see:
• Fatigue • Problems Sleeping • Lethargy • Attentional problems, such as distractibility, impulsivity, problems focusing
• Depression or anxiety, including obsessional thinking
or racing thoughts, "brain never stopping" (thinking constantly)
• Problems with eating (due to gastrointestinal symptoms, either from
the Lyme itself, or secondary to the antibiotics.)
• Behavioral problems, severe at times • In adolescent girls, by the way, PMS symtoms can be QUITE severe, as well.
Let's look at some of what the functional impairments might LEAD TO.
We can see the process here. The functional impairments that are the original
produced by Lyme (and when I say Lyme, I include, of course, the co-infections) result in further
problems for the child. (see the second column)
• Poor school attendance
• Chronic lateness
• Behavioral problems at school • Withdrawal from peers (particularly when peers fail to understand how sick
• Situation-induced mood problems (aside from the mood problems coming
• Weight gain or loss, at times, dramatic
• Mood swings, inappropriate verbal ou