Lyme Disease Association, Inc.
Rhode Island School Nurses Association
Presented by Pat Smith, President, Lyme Disease Association 10/19/2003
Lyme is the most prevalent vector-borne disease in this country and the most prevalent vector-borne bacterial disease in the world. In 2002, 24,000 were reported, an increase of 35%.That figure equals about 1/10th of actual cases, thus there were 240,000 new cases in 2002.
The lack of an effective test for Lyme, its ability to mimic other diseases, plus the existence of other tick-borne diseases acquired from the bite of the same tick often lead to a delay in diagnosis and treatment, sometimes producing chronic disease with CNS involvement, with subsequent antibiotic difficulty in penetration to eradicate the organism. 10-15% of individuals who acquire Lyme develop chronic disease, with children at the highest risk of contracting Lyme, leading to problems obtaining an education due to prolonged absences, fluctuating symptoms and cognitive difficulties. They are academically, socially, and emotionally isolated from their peers. They have few or no friends, no regular school attendance, no sports or activities, and no self-esteem. For them, to get out of bed is an accomplishment, to shower is a miracle. Some contemplate suicide, unfortunately, some are successful.
A law in NJ, developed by LDA (then LDANJ), requires teachers who have students with Lyme to be in-serviced annually on the disease. A NJ State Department of Education-approved Lyme disease curriculum is available for districts in endemic areas, although its use is not mandated. Unfortunately, many districts are not aware of the law and few comply unless pressed by parents to do so. The LDA is working with two other groups in CT to try and implement similar legislation.
The medically community is not doing a good job disseminating information about children with Lyme, and the politics surrounding the disease are dictating who has the disease and how it can be treated. Antibody testing is unreliable, about 40% accurate. Antibiotics appear to control, but do not necessarily eradicate, infection. Psychiatric symptoms and behavior problems are often overlooked as Lyme manifestations, although current literature is replete with examples of psychiatric illnesses whose origins are probably bacteriological.
A set of symptoms may be present in a patient for a period of time, then new ones may be added to or replace the original symptom set, since Lyme disease can attack all the major systems in the body from musculo-skeletal to arthritic, neurologic, psychiatric, ophthalmologic to cardiac. The musculo-skeletal system may be the initial focus of the disease, which can limit a student’s ability to participate in physical education and preclude him from carrying his books. However, less than a day after the bite of an infected tick, the bacteria can enter the central nervous system causing everything from memory loss and speech difficulty to emotional outbursts and depression. Chronic lateness, brain fog, letter and number reversal, and spelling difficulty can all signal disease in a student. Patients can go blind and deaf, and develop heart block, memory loss, mental confusion, seizures, a dyslexic type of condition, and ADD symptoms. Studies at Columbia University have demonstrated that individuals with Lyme disease have raised their IQ 22 points after appropriate treatment.
What I call “transitory learning disabilities” may develop in a student with Lyme disease. The type and duration of such disabilities are dependent upon affected body systems, length of infection, student’s general condition, and maybe the course of treatment. Patients beginning treatment often experience a Jarish-Herxheimer reaction, or Herx, an intensification of symptoms—the patient gets worse before he gets better. Unfortunately, this reaction may often go unrecognized, even by the physician.
In 1992 in Washington, I presented to Congressman Christopher Smith, the Centers for Disease Control & Prevention (CDC) and the National Institutes of Health (NIH), a 9-district school study showing the impact of Lyme disease on children. As a result, the CDC came to NJ and studied Lyme in 5 of those 9 districts. The resulting CDC unpublished study of 64 students showed that the median duration of illness at the time of interview was 363 days, and the mean number of school days missed because the child was too ill to attend was 103 days (with a range of 2 to 548 days). The median duration of home instruction was 98 days, with a range of 5 to 792 days. Another study by NJ family therapist Maggie Smith showed an 11.2 months average school absence due to Lyme disease.
The cost estimate available for medical treatment for 54 of the CDC study children was $5.2 million, and more than one-third of families of the affected children had 3 or more members who had at some time been diagnosed with Lyme, and 40% of the mothers were LD diagnosed.
78% of the parents stated that their children experienced a fall in grade point average during the time of illness, 79% experienced a decrease in the number of friends. A quote from the CDC study sums up the magnitude of the problem: “Perhaps the greatest costs incurred by the study children were the social costs of the illness and its treatment. Schooling and extra-curricular learning activities were seriously interrupted for most children; often, children spent large blocks of time as semi-invalids, isolated from social groups and missing out on cultural, sports, and social activities. School performance of nearly all children fell, sometimes drastically, and in several instances was said to interfere with selection by colleges and universities.”
Problems in the schools develop because these patients don’t look sick, and sometimes don’t act sick. Their symptomatology may vary from month to month, day to day, even minute to minute. They are late for school because they cannot get out of bed in the morning. They are labeled lazy, uncooperative, faking. Johnny cannot focus on his work no matter how hard he tries. He is labeled ADD. Jane cannot think. She walks around in a fog, barely getting through the day. She is labeled neurologically impaired. 15 year-old Ben reverses his letters and cannot spell. Officials are puzzled, since he won the state spelling bee 3 years ago. Fred does a fine job of cutting and putting a shop project together but he refuses to put his plans on paper. The teacher says he’s defiant and thinks he knows everything. What do these children all have in common? Each has Lyme disease that has manifested in a different way. Each has gone unrecognized as such by the school.
Although educating the student with Lyme disease can sometimes be a frustrating experience for the district, it can be an even more frustrating one for the student and his family. Education of the staff about the disease, cooperation with parents, and flexibility by the district in providing the necessary accommodations are the keys to success.
Behavior or performance inconsistent with past observations of a student with existing Lyme by a staff member can lead to a change in medication by the physician, since unprecedented student behavior can be indicative of change in disease status. Recognition of manifestations possibly attributable to Lyme in a student without disease may lead to early diagnosis and treatment.
To educate children with Lyme disease, we all must learn to think outside the box. It is very tempting to label a child who cannot pay attention ADD, or a child who is experiencing emotional outbursts as a discipline problem, or a child who does not complete assignments or forgets his books as lazy or not responsible. Instead, we must recognize that the disease process probably plays a large role in his or her behavior, and with appropriate treatment, accommodations and understanding, these children can achieve their potential and go on to further education and become productive citizens. Thank you.
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