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Hi, We are looking for an advocate to help us work through some issues with our son's Lyme and the local school district. Before we make too many moves we want to make sure we are legally where we need to be.
This might help. Go to the LDA site. Click on Board Members. They have a new list of 2007 Board Members and advisors. Look at the last person listed on their Scientific and Professional Advisory Board. Mr. Alfred Tagliabue. Maybe he can help you. My best to you and your son...lymedesign
Posts: 263 | From Georgia | Registered: Feb 2006
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This is long....but you could use it when having to deal with his school. If he has missed 10 days (need not be consecutive) then he qualifies for a home tutor.
What Every Parent Needs to Know About Educating Their Child With Chronic Lyme Disease
By Alfred C. Tagliabue, M. Ed. Director of Student Personnel and Community Services, (Retired) Jackson Township, New Jersey
More often than not children who contract Lyme Disease are treated with antibiotics for a few months and do not require any additional educational supports or services to make up for lost time in school.
This is the rule for the majority of children who contract Lyme Disease, however there are many children who have a difficult time responding to standard treatments, for any number of reasons, and other children who become re-infected one or more times.
These children are considered to have ``Chronic Lyme Disease''. They have a multitude of symptoms and problems that make it impossible to keep up with their schoolwork without special accommodations and services from their teachers and school.
It is important to note that some physicians in the medical establishment do not recognize the term ``Chronic'' Lyme Disease. Some school physicians are among those who do not recognize the term ``chronic'' when dealing with students who have Lyme Disease.
If your child suffers from Lyme Disease and needs special education services or accommodations you may get a hard time from your school district if your local director of special education either had the disease or knows someone close to them who had the disease and was cured with a couple of months of antibiotics. These people are among the lucky majority that never become re-infected and respond positively to standard antibiotic therapy.
This article however, will deal with those students who do not respond well to standard treatment and have a variety of needs for special education services and or accommodations in the classroom.
While all states have their own special education laws there are two federal laws that protect students with Lyme Disease and supercede state code and regulations.
The first law that parents need to become familiar with is the Individuals with Disabilities Education Act or IDEA. This law deals with all students who have some form of disability.
Students with Chronic Lyme Disease may fit several different categories depending on how severe the Lyme Disease has impacted on the child's ability to profit from regular education.
Some classifications or categories could be ``chronically ill''; ``other health impaired'' or ``learning disabled''. You will need to obtain a copy of your state's special education code and read it carefully in order to become an active participant in the decision making process for your child.
Many states have slightly different categories and definitions than those given in IDEA. Remember that, the IDEA law supercedes all state special education laws except when the state law is more protective of your child's rights or offers more services.
It is also possible to have your child qualify under other more intense terms such as ``multiple disabilities'' or other categories depending on how the disease manifests itself at a particular time during the course of the disease.
There can be, in extreme cases, both neurological and psychiatric problems that may require additional medical and educational treatment. A ``red flag'' for parents when dealing with their school or school district, would be a suggestion to classify a child with Chronic Lyme Disease as ``orthopedically disabled''. This would show some archaic thinking on the school's part if they believed that Lyme Disease was like arthritis.
The most significant educational impact of Lyme Disease lies with lack of vitality to produce schoolwork, the ability to focus and sustain attention, memory and the overall ability to process and syntheses what is being taught. If a child with Lyme Disease had some severe orthopedic symptoms they would most likely also have some of the learning problems as well and this would qualify under the term ``multiple disabilities''.
Children with Chronic Lyme Disease can have a multitude of symptoms. These symptoms can change week to week, day to day and sometimes hour to hour. Every child is different, so parents and school special education committees (child study teams, etc.) need to listen carefully to both the students and the family physician that is treating the student for the disease.
Some children have their REM sleep interrupted by the disease and would have significantly more functional learning disabilities in the morning. I have found that allowing them to stay home in the morning and bringing them in at lunchtime provides them with a greater vitality needed for learning.
I would then provide home instruction between 4 and 7 PM for the subjects that were missed in the morning. This may continue for a few weeks or many months depending on the success of the medical treatment.
A very common problem for these students is the inability to focus and attend. In fact some children with Lyme Disease have been misdiagnosed with ADD or ADHD and have been treated with Ritalin. It is important to remember that Lyme Disease is diagnosed by excluding other diseases and disorders since there is still no 100% accurate test for Lyme Disease.
Another very common problem is memory loss and the ability to organize one's schoolwork. Any insult to the central nervous system can cause memory problems and once again the student's abilities can change day to day or hour to hour.
Motivation is also a key factor to learning. When children don't feel well they will have a tendency to become depressed and develop feelings of hopelessness. This will have a negative impact on their ability to perform academically.
Children with Lyme Disease have been accused of ``faking it'', trying to get out of homework and generally trying to beat the educational system. Educators need to fully understand all of the neurological and psychiatric implications of Lyme Disease and they need to understand that the children would much rather be well than to be sick.
Whenever you deal with a person with a disability you should provide them with an educational program that not only meets their needs but also provides them all the experiences and opportunities that a child without disabilities would encounter.
Children with Lyme Disease should lead as full and as normal life as they are capable given their individual symptoms and the severity of those symptoms at any given time.
The second federal law that is applicable to students with Lyme Disease is Section 504 of the 1973 Rehabilitation Act. This is not educational law. It is primarily civil rights legislation that prevents students from discrimination, if they have some type of disability that substantially limits the child's ability to learn.
School districts and parents together can decide which of these codes and format could best serve the child. While there are whole day workshops on the differences and similarities between Section 504 and IDEA I will attempt to highlight some issues to keep in mind.
As a former public school special education administrator I based the decision of whether to provide service to a student under Section 504 or IDEA on the projected outcome and level of service that could be reasonable assumed for a given student.
For example if a child only needs some classroom accommodations and some home work modifications that could be performed by the regular classroom teacher I would prefer to see that child served under Section 504.
While Section 504 requires a written plan signed by the parent, as does IDEA, there are far less procedural issues and students can be served faster than through IDEA in general. The written 504 plan itself is less complicated, faster and easier to write than an IDEA plan. Parents need to remember that all IDEA students are 504 students but not all 504 students are qualified under IDEA.
There can be some cases that that 504 students would not qualify under IDEA but these cases are rare. However, students with Lyme Disease often fit into these rare situations, primarily due to their ever-shifting medical and educational condition.
In general any service or program that can be delivered through IDEA and also be delivered through Section 504. In most cases districts would prefer using IDEA rather than Section 504 since there is no state or federal financial aid available to school districts through Section 504.
As I mentioned above, as a special education administrator, I would prefer that a child who would need special transportation, tutoring or other services that would increase their cost of education, be handled through IDEA.
If a student's needs can be met with accommodations and modifications that do not involve extra expenses to the school district, I have always felt that Section 504 was a quicker way to go without compromising the quality of service provided or the student's/parent's due process rights.
Parents basically have the same ``Due Process Rights'' if they become in conflict with their school district with IDEA and Section 504. Most state departments of education use the same conflict resolution procedures for both IDEA and Section 504.
You need to check these state procedures with your state department of education. Ultimately the United States Department of Education, Office of Civil Rights will hear both IDEA and Section 504 complaints against school districts.
You can call your state department of education to get the address and phone number of your nearest U.S. Department of Education, Office of Civil Rights. If you are reading this and saying to yourself `` This seems fine if my child is in public education but my child attends a private or religious school''. You are correct in thinking that all of this is may not apply.
Times are changing. Since the ``1990 Americans with Disability Act'' the rights of all students, public, private, religious and even home schooled children have been expanded through various court cases. I recently read a federal court decision in which the judge reinstated a preschool child with disabilities back into a private preschool program that had recently dismissed the child.
Most states have child advocacy organizations that can provide some guidance in conflict resolution or direct you to where you can obtain legal advice. I have found two Internet sites that can be very helpful. One is [http://www.ideapractices.org/]. This site contains the entire 1997 edition of the Individuals with Disabilities Education Act and Regulations, which can be downloaded and printed.
The second site is [http://www.504idea.org/]. This site contains the entire text of Section 504 of the 1973 Rehabilitation Act (which again, can be downloaded and printed) and gives a detailed comparison between IDEA and Section 504. This data will make you an informed participant when making educational decisions for your child.
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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This is also a long article, but Dr. Rissenberg is an expert in this field and I have found it helpful in advocating for lyme kids and their needs. Hope it helps.
Distinct pattern of cognitive impairment noted in study of Lyme patients
by Marian Rissenberg, Ph.D. & Susan Chambers, M.D. The Lyme Times, Vol. 20, January-March 1998, pp. 29 -32
1) Cognitive Characteristics of Chronic Lyme Encephalopathy
On the basis of both a formal neuropsychological study of 49 patients (APA 5/96) and on clinical observation and comprehensive neuropsychological examination of well over 100 patients, a distinct pattern of cognitive impairment occurring chronic Lyme disease can be described.
These patients consistently demonstrate deficits in directed, sustained and divided attention, planning and organization of responses, temporal ordering, verbal fluency, abstract reasoning, speed of processing, and motor programming.
The overall pattern of intellectual impairment is not unlike that seen with diffuse brain injury, and it most often results in some degree of work-related disability.
Although performance is impaired on measures of cognitive functions associated with specific brain regions -- receptive and expressive language, visuospatial problem solving and memory -- the quality of performance is not suggestive of focal lesions in these areas.
Rather, deficits are secondary to impairment of higher level integrative functions, likely mediated by complex neuronal systems. Specifically, the receptive language deficit is secondary to impaired auditory tracking and slowing of mental processing. The expressive language deficit is secondary to impaired word retrieval and response planning,
The visuospatial problem solving deficit is secondary to impairment of mental flexibility, conceptualization and the ability to compare and contrast necessary in decision making.
Finally, deficits on test of memory function are most often secondary to impairment of the encoding or initial processing of information, which depends on attention, and the retrieval of stored information. The storage of new information, or memory per se, is rarely impaired.
This pattern suggests that cognitive dysfunction in chronic Lyme, while expressed variably across individual patients, results from a common factor -- the breakdown of diffusely represented processes involving both integration and activation, and impacting primarily on attention and reasoning. The fluctuation of impairment over short periods of time suggest that a physiologic rather than a structural mechanism is responsible.
2) Neuropsychological deficits in chronic Lyme disease (A study presented at the annual meeting of The American Psychiatric Association , May 1996)
The neuro-psychological characteristics of 49 patients with Lyme disease were examined. The study set out to answer three questions: 1) Do all patients with subjectively perceived cognitive dysfunction have measurable intellectual impairment on objective testing?
2) In those without measurable impairment, does depression account for the perception of cognitive dysfunction?
3) What is the nature of the cognitive impairment in Lyme disease when it does occur?
Subjects were patients seen consecutively between 1990 and 1994 in a private neuropsycological practice with complaints of cognitive dysfunction and a symptom complex consistent with Lyme disease. Diagnosis was based on former CDC criteria. Mean duration of illness, defined as the time from the onset of general symptoms to the neuro-psychological exam, was 4.7 years (range: 3.3 to 14 years). Mean age was 39.9 years (range: 21 to 58 years) from 18 to 60 years. Mean level of education was 15.3 years (range 12 to 20 years).
Subjects were interviewed and administered a comprehensive battery of tests, including the complete WAIS-R and WMS-R, and additional test of language, attention, reasoning, visuospatial processing and complex motor function.
They also completed the Beck Depression Inventory and a symptom checklist. Tests were divided into seven groups based on the cognitive functions they are presumed to measure: Attention, Memory, Language, Visuospatial Processing, Reasoning, Verbal Fluency and Motor programming.
Subjects were grouped into three levels of impairment based on their neuropsychological performance: Intact (N=11; 22%), with no functions impaired, Moderate (N=31; 63%) with two functions impaired, and Severe (N=7; 14%) with three or more functions impaired. Subjects in the Severe group met diagnostic criteria for dementia. The correlation between depression and cognitive impairment was nonsignificant, but the trend was positive, rather that negative.
Anxiety by self report was significantly greater in the impaired groups that the Intact group. Duration of illness was greater in the Severe group (nonsignificant).
Of the 38 subjects with cognitive impairment, deficits of attention were most common, occurring in 26 subjects (68%) Deficits of memory storage were least common, occurring in 8 subjects (21%), Motor, Verbal Fluency, Visuospatial, Language and Reasoning deficits occurred in 24, 26, 29, 36 and 36% of the subjects respectively.
3) Possible Pathophysiologic Mechanisms of Cognitive Impairment in Lyme Disease
Based on these findings and on patients' reports, two characteristics of Lyme Encephalopathy arise which provide insight as to possible neurophysiologic mechanisms: One, the nonfocal nature of the cognitive functions affected, and
Two, the subtle fluctuations and reportedly abrupt and global shifts in cognitive function from one day to another in a given patient.
Four broad categories of possible neurophysiologic mechanisms might be compatible with this pattern:
1) Diffuse cerebral diffusion abnormalities -- Single photon emission computerized tomography (SPECT) scans of the brain in Lyme disease often display a diffuse pattern consistent with heterogeneous areas of hyperfusion and/or diminished neuronal metabolism. While vasodilators are often capable of reversing these abnormal patterns on SPECT scan, this reversal does not consistently correlate with a symptomatic improvement in cognitive function.
2) Alterations in cellular metabolism at the cortical level -- Evidence of alterations in neurotransmitter function is suggested by clinical evidence of cognitive improvement following treatment with selective serotonin reuptake inhibitors (SSRI's) which appears to be independent of their antidepressant effect. Systematic studies of the impact of SSRI's on cognitive function, as well as the role of other transmitters, are required.
3) Neuro transmitter abnormalities (imbalances of synthesis and/or receptor activity) -- Neurotoxic substances may well play a role in Lyme Encephalopathy. given the neurotropic nature to Treponema pallidim , and the close parallel between syphilis and Lyme disease, it is possible that Borrelia burgdorferi could produce intracellular or extracellular neurotoxins which we have yet to identify.
4) Neurotoxic substances produced endogenously or possibly exogenously -- Endogenous neurotoxins have been identified as by-products of the humoral immune response. Among these is quinolinic acid, a product of the interleukin cascade system, which accumulates as a result of the humoral response to acute infectious agents and functions as a neuronal excitotoxin. As there are many similarities between Lyme Encephalopathy and the nonspecific mental dysfunction of acute systemic infections, such as influenza, it is quite possible that continue stimulation of production of quinolinic acid and other cytokines plays a role in the pathophysiology of Lyme encephalopathy.
4) Clinical Impressions and Implications for Diagnosis and Treatment in Chronic Lyme Disease
This study demonstrates that for the majority of chronic Lyme patients with cognitive complaints, there is in fact a measurable and significant decline in intellectual acuity. The nature and severity of the cognitive impairment is such that it interferes with all aspects of normal functioning: employment, home, marriage, social interactions, and general emotional well-being. Rather than the cognitive complaints being secondary to anxiety or depression, as is sometimes suspected, depression and anxiety increase with, and are apparently secondary to, cognitive impairment and the emotional and practical impact of a loss of competence. Thus, while patients with chronic Lyme disease can present a confusing and "psychiatric" picture to the clinician, it is important that their concerns be properly investigated and addressed.
Patients with Lyme encephalopathy complain of problems with memory and concentration, word retrieval, confusion, problems with thinking, "mental fogginess", a decline in job performance, difficulty with calculations, directions, and judgment. Decreased initiative, manifest as difficulty getting started with or following through with projects is often noted.
Mood disturbance is common with complaints of irritability, explosiveness or "a short fuse," sadness, hopelessness or guilt, increased anxiety or mood swings.
Sleep disturbance is also common, and can present as initial, middle or terminal insomnia or some combination of these. Fatigue is universal. Headache is common, and of course joint and muscle pain. Increased sensitivity to light and noise, visual disturbance, and tingling in the extremities are also common.
On interview patients with Lyme encephalopathy tend to be vague and disorganized in the presentation of the history of their illness. This is despite their close attention to their symptoms and having recounted them many times before. Although in most cases memory of discreet events - tests, dates, diagnoses, responses to medications -- is intact, the patient is unable to recall them spontaneously or organize them in temporal order. They may be unclear as to their chief complaint. They may completely lose track of what they were saying, sometimes repeatedly, or of what the question was. They may get off on a tangent and have trouble re-orienting themselves. Frequent prompting and refocusing will be necessary. beginning the interview with an open-ended question like "Tell me what the problem is" will allow these qualities to become clear.
Often patients with chronic Lyme disease will seem overly focused on their illness, or overly concerned with convincing the clinician that they are ill. The clinician may be tempted to interpret this as evidence of a primary psychiatric disorder.
It is important to understand that the frustration many of these patients experience is real, and results from the general attitude of doubt toward Lyme disease as a serious and chronic illness, the invisibility of their symptoms, the difficulty in getting a definitive diagnosis and getting approval for extended treatment from insurance carries. Many have been accused of hypochondriasis or malingering. As with head injury, the patient may "look fine" though they are having difficulty with very basic work, social and day to day functioning.
The cognitive deficits in chronic Lyme disease involve primarily attention and arousal mechanisms. Patients have difficulty keeping track of external and internal events, retrieval of information from memory and with planning and sequencing, as occurs in attention deficit disorder. However their experience is different from that of ADD, in that rather than having the experience that there are many thoughts competing for attention, the Lyme patient has difficulty bringing any thought into clear focus.
They experience difficulty thinking. One patient described it as the universe ending six inches from his face. He can't process information that is not immediately apparent, immediately experienced. Another said that when he tries to think about something, or figure something out, all he can do is repeat the question -- he can't get to the meaning.
This is like the idea of "surface" versus "deep" processing in cognitive psychology. Reading a passage for typing errors would be surface processing, while reading for meaning is deep processing. One patient, a physician, described it as a "mental intention tremor" -- the more she tries to focus on something the more out of focus it becomes.
The clinician should proceed with empathy and reason. Specific cognitive complaints in previously high functioning individuals are unusual and indicative of serious illness, either psychiatric or neurologic. Comprehensive neuropsychological evaluation will most often differentiate the two.
Where the neuropsychological exam is normal or there is a significant psychiatric component, a psychiatric evaluation is advised. Psychiatric symptomatology is not uncommon in Lyme and the presence of depression, anxiety, obsessive compulsive symptoms, flat affect and so on may cloud the issue of significant cognitive decline.
Both the cognitive and psychiatric symptoms would be expected to improve with antibiotic treatment in Lyme encephalopathy. However sometimes concurrent treatment with psychotropic medication is necessary.
Unfortunately for some patients significant cognitive impairment persists even after years of antibiotic treatment. These patients may never be able to return to their premorbid level of employment, or be gainfully employed at all. Cognitive remediation can help them learn strategies for improving memory and concentration and relieving stress.
Support and advice in regard to living with a chronic condition is equally important. Strategies include reducing work hours when possible, taking regular rest periods during the day, limiting the number of outings in a week, and using a calendar to stay organized and structure their time.
5) Cognitive impairment in Lyme disease: specific functions and the impact or deficits
1. Attention and mental tracking: includes directed and sustained attention: the ability to direct and maintain one's focus on a particular event or idea, whether in the environment or internally; and divided attention: the ability to simultaneously attend to two events, or dot two or more things at a time, or to retain awareness of one thing while doing another.
Impact: difficulty functioning effectively in many situations, remembering what one was doing before a distraction, keeping track of conversation, taking notes while someone is speaking, remembering that someone is on hold or what you were about to say.
2. Memory: Retaining new information. Impact: secondary to impaired attention, slowing of processing and the retrieval of stored information, but not storage per se, a tendency to lose or forget things, miss appointments, repeat oneself.
3. Receptive language: understanding spoken or written language Impact: secondary to impaired attention and speed of processing, difficulty participating in meetings or social conversation, difficulty with reading comprehension.
4. Expressive language: Using spoken or written language to express ideas Impact: difficulty finding the right word, using the wrong word and not noticing, not being able to express oneself or communicate
5. Visuospatial Processing: Efficient scanning of the visual field, making sense of how things are related in space, visuospatial conceptualization and problem solving. Impact: a tendency to get lost, difficulty with reading comprehension.
6. Abstract reasoning: The ability to generalize from the particular, to identify the common factor between related concepts, to compare and contrast two things or ideas, to see the "big picture", to identify the critical factor in a situation, to anticipate consequences and make inferences regarding cause and effect. Impact: difficulty with decision making, planning, and problem solving.
7. Speed of mental and motor processing: the ability to think and respond quickly, critical to understanding speech which occurs at a fairly constant rate. Impact: difficulty understanding or keeping up a conversation, functioning in a timely manner in day to day situations, meeting deadlines.
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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