THE ROLE OF NEUROPSYCHOLOGICAL TESTING IN CHILDREN WITH LYME DISEASE
Leo J Shea III, Ph.D. and Judith G. Leventhal,Ph.D.
The cognitive problems associated with Lyme disease and other tick-borne illnesses include
difficulty with: 1) attention and concentration, 2) speed and efficiency of processing information,
3) learning and memory, 4) auditory processing and language expression, 5) planning and
organization and 6) multitasking. These cognitive symptoms have a significant impact on
learning and school performance.
Children with Lyme disease may have difficulty sustaining attention in the classroom, answering
when called on by the teacher, completing home work assignments and taking tests. The result is
that children with Lyme disease frequently get poor grades and consistently perform below their
innate intellectual ability. Our recent research has shown that mathematics and reading scores of
children with Lyme disease are often significantly lower that their verbal and non-verbal
Cognitive weaknesses have a direct impact on a child’s self-confidence and self-esteem and put
children at risk for maladaptive behaviors and disruptions in peer and family relationships. It is,
therefore, essential to identify the cognitive symptoms experienced by the child and to initiate
appropriate interventions, such as cognitive remediation, and provide academic accommodations
to address these problems.
The purpose of the neuropsychological testing is to assess cognitive functioning and to
understand how existing cognitive weaknesses impact the child’s ability to manage demands of
everyday academic, family and interpersonal life.
A child should be referred for a neuropsychological evaluation to asses cognitive functioning and
to make education and treatment recommendations as soon as a Lyme/TBD diagnosis is made.
Having this information early in the process allows parents, teachers and medical specialists to
better understand a child’s cognitive strengths and weaknesses. The knowledge derived from the
evaluation often verifies or enhances information about the child’s developmental, cognitive and
behavioral functioning and allows medical treaters, teachers and parents to make the necessary
changes to maximize the child’s academic, emotional and interpersonal functioning.
The neuropsychological or neurocognitive evaluation is conducted by a licensed psychologist
who has specialized training in neuroanatomy and brain-behavior relationships. This person is
referred to as a neuropsychologist. Due to the complex nature of Lyme disease it is also
important the child be evaluated by a neuropsychologist with a specialty in tick-borne illnesses.
Pre-evaluation steps include completion of a history form by the child’s parents or legal
guardians and review of medical and academic records and previous evaluations.
The first evaluation session begins with an in-depth clinical interview with parents and child.
Consideration of family factors and interactions is important to understand how the family
system is impacted by Lyme disease. Following the clinical interview, testing is initiated. The
testing schedule will vary according to child’s medical condition, medication regimen, and
energy level. For children with Lyme disease it is best to perform the evaluation over several
days as they typically do not have the stamina to sustain more than a few hours of testing at any
To maximize a child’s performance during the testing, it is important to monitor
fluctuations in attention and concentration, and physical and mental stamina and provide
refresher breaks whenever necessary. Generally, neuropsychological testing takes eight to twelve
hours divided over two to three sessions. An additional ten to fifteen hours of the
neuropsychologist’s time will be required to analyze the test data, prepare the final report and
conduct the feedback session.
The neuropsychological evaluation consists of a battery of standardized, age-normed tests that
allow for the comparison of a child’s test performance with that of other children in his/her age
group. It also provides for a profile of a child’s strengths and weakness across a variety of skill
domains. Those domains include:
o Verbal and Non-verbal Intellectual/Conceptual Abilities
o Visual Discrimination
o Visual-Spatial Skills
o Visual-Motor Skills
o Graphomotor Skills
o Fine Motor Skills
o Sensori-Motor Skills
o Attention and Concentration
o Information Processing Speed
o Auditory Processing
o Language/Oral/Written Communications Skills
o Academic Skills
o Higher Level/Conceptual Reasoning
o Executive Abilities (problem solving, planning, organizing and prioritizing)
o Emotional State/Traits
Scores on tests across these domainsallow for the comparison of the child’s performance relative
to his/her innate intellectual ability as well as to same age peers. The profile of relative strengths
and weaknesses can be used by the neuropsychologist to determine the appropriate interventions
that will maximize the child’s functioning.
Recommended interventions are, for example:
breaking tasks into smaller parts to make tasks more manageable, developing step-by step plans
for organization of tasks, working on tasks at a slower pace to improve accuracy, extending task
time limits, developing multi-modal and hands-on learning tasks, employing repetition to
improve recall and using cues to increase recognition of learned information. Such interventions
and strategies will maximize a child’s ability to utilize his/her innate intellectual skills and
At the end of the final testing session, a one-hour feedback session is conducted to provide
preliminary findings and initial impressions about the child’s strengths and weaknesses and to
answer any immediate questions. Upon the completion of the report, a feedback sessionis
conducted with the parents and the child. Parents are also encouraged to invite whomeverelse
they wish to participate in the session.
At this session, the neuropsychologist reviews the child’s cognitive strengths and weaknesses and
discusses how they may impact the child’s life. Areas addressed include academic, social, emotional,
family and interpersonal relationships and extracurricular activities. Recommended treatments and
strategies are discussed to utilize areas of preserved strength and to ameliorate the areas of documented
difficulty or discord.
Treatment typically involves several modalities:
o Cognitive Remediation: A treatment intervention that was originally designed for
individuals who had sustained abrain injury and is now widely used for individuals who
are affected by any neurological impairment, attention deficit disorder or other illness
compromising cognitive functioning.
This therapy helps the child cope with his/her cognitive deficits by learning compensatory
strategies to improve functioning. These strategies allow the child to maximize innate intellectual
skills and to help restore self-confidence and self-esteem. Cognitive remediation is provided by an
experienced psychologist trained in neuropsychology and one who understands the interaction
between brain function and the behavioral aspects of everyday life.
o Individual Psychotherapy: Most often, the treatment plan will also include
psychotherapy to help the child process the significant losses experienced as a result of
the devastating effects of Lyme disease (reduced attendance at school, reduced
interaction with friends and classmates, reduced ability to engage in sports or hobbies,
depression, mood changes, emotional rages, and anxiety).
o Family Therapy: Lyme disease affects multiple systems of the body. Just as each system
in the body responds to the infection, so too the family system responds to the disruptions
in spousal, parental and sibling roles. Lyme disease disrupts all aspects of a child’s life
and compromises interpersonal relationships. It is therefore critical that the child and the
family come together in a common understanding of the nature of the disease and what
each member of the family can do separately and collectively as part of the family system
to support the child.
The child’s decline in personal functioning is impacted by the frustrations and burdens that
the illness places on those s/he needs most for support. The findings of the neuropsychological
evaluation can be used to help educate those individuals actively involved in the child’s life.
This will help them better understand the nature and complexity of the deficits and how they
can best interact with the child so that stress on the external systems can be reduced and
more positive academic and interpersonal roles can be reconstructed. Furthermore, as is
often the case, more than one family member may be suffering from Lyme disease.
This makes family therapy all the more critical to help restore a sense of well-being in the life
of the family.
o Education of School Officials and Academic Accommodations: Children with Lyme
have difficulty functioning consistently in their daily life. Reductions in their level of
physical and mental energy require that they revise and reduce the demands of their
participation in activities at school, in sports and with family and friends. Academic
accommodationsmust be put in place to assist them in their functioning at school.
These accommodations may include: reduction in their academic schedule, home tutoring,
reduced subject assignments, provision for extended school absence, limits on school
hours, extension of time limits for school tasks and tests, and allowance for reduced
participation in physical education, individual and team sports and other extracurricular
activities. Teachers and other school officials need to beaware of the undulating nature
of Lyme disease. A child may appear to be functioning well one day or for part of the day
and then may be so debilitated by a sudden onset of Lymesymptoms that s/he will have
to go to the nurse’s officeor leave school. Repeated tardiness and/or absences must be
expected and allowed.
The neuropsychologist often serves as an advocate for the child when dealing with school
systems and teachers. At the request of parents or school officials a neuropsychologist
can serve as a consultant to participate at on-site school meetings or be available by
conference call to discuss in depth the child’s strengths and weaknesses and assist in
formulating and implementing academic accommodations.
The Lyme literate neuropsychologist can also serve as a consultant to school systems to
design and implementacademic and environmental accommodations to support the needs of
students with Lyme disease. This most often involves design and implementation of 504 and
Individual Educational Plans (IEP) to conform to federal and state statutes.
o Education of Medical and Mental Health Specialists: Some medical and mental health
professionals may not be aware of the neurocognitive and neurobehavioral problems of a
child with Lyme disease. They may inadvertently or incorrectly ascribe the child reduced
functioning solely to an emotional problem thus, doing a disservice to the child.
A thorough neuropsychological report can assist medical andmental healthprofessionals to
understand the organic basis of the child’s difficulties as well as to provide assistance in
addressing the child’s needs. Often children with Lyme disease will require specialized
audiological and/or vision tests to more acutely diagnose sensory reductions often seen
on the neuropsychological evaluation. Identification of theses sensory changes associated
with Lyme disease is critical in maximizing academic performance.
o Re-Evaluation: A one-year neuropsychological re-evaluation is commonly recommended
to assess treatment effectiveness, the status of the child’s neuropsychological strengths
and weaknesses and to make revisions in the treatment plan based on the tests results.
Summary: The value of the neuropsychological evaluation is that it provides the necessary
information that can lead to improvement in academic performance, participation in sports and
recreational activities, social and family relationships, mood and behavior and increased self-
confidence and self-esteem.