Precautions for Hunters and Hunting Dogs

Precautions for Hunters and
Hunting Dogs
The American Veterinary Medical Association http://www.avma.org/ has compiled a document which discusses

many diseases affecting hunters and their dogs. A number of tick-borne disease are included such as Lyme,

anaplasmosis, ehrlichiosis, babesiosis, RMSF, Q fever, tularemia link to PDF

Precautions for Hunters and
Hunting Dogs
The American Veterinary Medical Association http://www.avma.org/ has compiled a document which discusses

many diseases affecting hunters and their dogs. A number of tick-borne disease are included such as Lyme,

anaplasmosis, ehrlichiosis, babesiosis, RMSF, Q fever, tularemia link to PDF

2010 NJ Lyme Case Numbers by
County
New Jersey was rated second in total reported CDC cases in
2010. Here is a table of the county wide distribution.

Total includes confirmed and probable numbers reported by State to CDC
annually
Rate = confirmed and probable/100,000 population (2010 census figures)
Number in parenthesis after county is rank in State by case numbers.

    2010      ConfirmedProbableTotal Rate Suspect
  Atlantic       95        29     124 45.2     86
   Bergen
                 148       18     166 18.3     102
    (10)
 Burlington
                 221       25     246 54.8     69
    (6)
   Camden         9        0       9    1.8    122
  Cape May       27        0      27   27.8    23
 Cumberland      86        11     97   61.8    34
    Essex        134       12     146 18.6     69
 Gloucester      112       0      112 38.9     95
   Hudson        35        5      40    6.3    37
 Hunterdon
                 323       0      323 251.7    259
    (4)
   Mercer        145       13     158 43.1     102
 Middlesex       123       11     134 16.5     172
  Monmouth
                 328       9      337 53.5     369
    (3)
 Morris (1)      426       53     479 97.3     366
 Ocean (5)       192       57     249 43.2     137

Passaic
                156        21     177 35.3     90
    (9)
    Salem        25        5      30   45.4    32
  Somerset
                180        24     204 63.1     193
    (7)
 Sussex (2)     312        87     399 267.3    295
    Union        58        9      67   12.5    77
 Warren (8)     185        3      188 173.0    166
  Unknown        0         0       0    NA      0
 Statewide     3320       392    3712 42.2    2895

Click here for printable pdf of NJ Lyme Disease Case Numbers by County

Tick-Borne     Disease   In
Children And Adolescents A
Medical      Illness/     A
Multidisciplinary “Cure”
We in the Lyme world all know that tick-borne diseases are
caused by complex organisms that can affect just about any
part of the body, and we realize that the key to getting well
is finding a Lyme- literate doctor, obtaining an accurate
diagnosis, and comprehensive, efficacious treatment. While
treating the medical aspect of the disease is paramount, for
children and adolescents with chronic Lyme disease, medical
treatment alone is often not enough. Many of these children
have Lyme related psychiatric symptoms or educational
impairments. Their serious symptoms, combined with the
duration of the illness often leads to gaps in their

development. Their isolation can leave them lonely, and
inhibit their ability to interact with peers. These issues are
best addressed through the coordinated efforts of a team.

Children and adolescents with chronic Lyme, often meet the DSM
criteria for one or more “mental illnesses”–anxiety disorder,
depression, anorexia nervosa, AD/HD, as well as disorders in
which behavioral problems manifest–oppositional defiant
disorder, conduct disorder, and for some, psychosis. Even
though the “mental illness” may be due completely to Lyme, the
serious psychiatric symptoms cannot be ignored. For many,
psychiatric medications are essential, in managing the
symptoms during treatment, including the complex issues of
managing symptom flares (Jarisch Herxheimer reactions),
brought on by the antibiotics. Thus there is a need for
involvement of Lyme-literate psychiatrists who treat children.

These “mental illnesses” carry a constellation of issues. The
anorectic children, for example, often have an aversion to
certain foods, or a rigid pattern of eating, and there is an
obsessional quality to their thinking, about food and
exercise. Some put a pathological spin on suggestions doctors
make for a “yeast free” diet while on antibiotics, some refuse
to take any medications by mouth. Weight gain typical of some
Lyme patients terrifies the anorectic, and pathological weight
loss brings them comfort. These issues need to be dealt with
in individual and family therapy, to keep the anorectic child
safe and healthy during the acute phases of the illness and
Lyme treatment.

Anxiety is another symptom common to children with Lyme. The
anxiety presents for many in their fears about school failure,
even as their cognitively impaired brains struggle to succeed.
It takes a Lyme-literate team to deal with the anxious child
with Lyme–the medical doctor who treats the illness, the
psychiatrist who prescribes the medication for anxiety, the
psychotherapist who teaches the child and family strategies
for dealing with the anxiety, helps the child learn to think

in a different way (cognitively-based therapy is helpful
here), and the Lyme-literate school team who provides support
and accommodations for the child who has impairments that
affect learning. The school nurse or guidance counselor can
provide a brief respite, and support, for the anxious child,
in the middle of the chaos of the school day.

Behavioral problems are often due simply to the infection in
the brain, and will resolve as the illness is treated
comprehensively. However, the treatment could take a long
time, and the behaviors need to be addressed and managed
during these difficult times. Intervention and support of a
Lyme-literate psychiatrist and psychotherapist, as well as
involvement of a parent advocate who develops a plan for
managing behaviors in the school setting can make a
significant difference in the life of the child and the
family. Traditional “behavior plans” are often not effective,
when the behavior is driven by an infectious cause.

Attention needs to be paid to the tasks of the various
developmental stages the child with chronic Lyme is going
through. The most difficult stage to manage is adolescence,
where the Lyme patient may deny the illness and resist
treatment to be “normal”, in an attempt to individuate. At
this stage, some will self-medicate the Lyme symptoms with
street drugs. If the child has been ill for a long time, it
may be difficult to distinguish between symptoms of the
illness and who the child really is. It is helpful if these
symptoms are addressed in therapy, as well.

Part of the work of childhood is to develop social skills, to
learn how to interact with others. Children learn that at
home, in their communities, in school, on the ball field. When
a child is ill with chronic Lyme, often her exposure to others
is very limited. Some children have been on homebound
instruction for months and years, not even having the school
community to interact with. Socialization needs can be
addressed in therapy, and for those who are seriously ill,

some social experiences can be built into their week.

CONCLUSION AND RECOMMENDATIONS

While physicians who treat Lyme are focused on diagnosing and
treating the medical illness, it is also important to
recognize that there is more to treating the child with Lyme
than ridding the body of infection. We need an integrated
approach that includes doctors, nurses, psychiatrists,
psychotherapists,     neuropsychologists,   educators,    and
advocates. It is important that we are aware of each other’s
roles, and communicate regularly.

The impact of Lyme disease on children and adolescents is not
just a medical issue. By working together to support and treat
the whole child, we can help our children achieve more than
physical health. They can become resilient, life-loving,
successful people, and put the nightmare of the Lyme years
behind them.

Click here for printable pdf of article.

Published In Lyme Times Children’s Treatment Issue #42 –
Summer, 2005

Sandy Berenbaum, LCSW, BCD Family Connections Center for
Counseling

Offices in Brewster, NY and Southbury, CT www.lymefamilies.com

Ph: (203) 240-7787 Fax: (203) 405-6200

© 2005

Reflections On Lyme Disease
In The Family
Ideally, the family is a safe, protective, nurturing unit in
which a child develops and grows. The early years are
demanding for parents, who, in addition to bonding with their
child, must make daily decisions that are vital to their
child’s life and growth. In contrast, the adolescent years are
emotionally challenging, as parents struggle to remain
connected, supporting their children’s bid for independence,
while protecting them from making sometimes disastrous
choices, as the child struggles to develop her own ideas and
direction.

Let’s add Lyme disease to this picture. Parents of children
with Lyme disease carry an enormous burden, far greater than
those outside the Lyme community are likely to understand.
They worry about accuracy of diagnosis, selecting the right
doctor and treatment approach, paying for treatment that is
very costly, and the complexities of identifying and
advocating for educational supports that may be necessary for
a child to make it through school.

Other members of the family may be ill as well, often the case
with Lyme disease. Aside from the increased financial burden,
there is the stress of trying to meet the needs of several
Lyme disease patients in one family. It is particularly

difficult when one of those Lyme patients is a parent, and
when the ill parent suffers from neuropsychiatric problems!

Given the complexity and unpredictability of symptoms, and the
inadequate understanding of this illness in the greater
community, parents often find that they do not have the
support of family and friends, as they struggle to cope.
Unwittingly, some well-meaning family members may make
comments that undermine parents, even challenging the medical
decisions that they make. At times, family members mistakenly
attribute the child’s symptoms and behaviors to willfulness on
the part of the child, or inadequate structure and limits on
the part of the parents. Failing to appreciate the complex,
debilitating nature of this illness, they do not acknowledge
the struggle the family is going through, and are therefore
not a reliable source of support. This reality in the life of
the family of a child with       Lyme   can   be   particularly
disappointing and painful!

Behavioral problems are not uncommon in children with chronic
Lyme. If the child is subject to rages or other severe
psychiatric symptoms, this increases the stress level in the
family, and makes the family’s day to day life far more
complex. Lacking the support and help they would have hoped to
get from their family and friends, parents truly feel
isolated. They are often out on a limb with their child, but
they are also out there alone.

Where a young child is concerned, although his parents do
their best to help him feel safe and protected, hiding their
worries and fears, the child surely senses that something is
very wrong. Parents can’t help but worry about whether their
child will ever fully recover. What might the residual damage
be…to his body, to his brain, to his experience of life? On
some level, the young child is keenly aware that he is not
growing up in the carefree environment that peers may be
experiencing. Worries certainly permeate the household. Even
deciding whether to allow a child to go on a school field

trip, or give permission for a teenager to go hiking with
friends may be a struggle for parents, who worry that their
child, already very ill, might be re-infected. A sense of
normalcy is lost.

Where the adolescent is concerned, a primary issue is how to
support the teenager in her efforts to individuate and move
toward independence, while taking appropriate precautions for
treating the illness. The physical and emotional dependency of
a sick teenager may delay or interfere with the

task of individuating. Or, the teenager, supported by
inaccurate information that is all around them, may separate
by challenging the Lyme diagnosis or treatment, and refusing
to go to the doctors or take prescribed medications. In
denying their illness, teenagers may even come to believe that
their symptoms represent who they are, as they lose touch with
the fact that these symptoms are caused by a treatable medical
illness. They may therefore see themselves as lazy, not very
bright, quick to anger, moody. And, in the process of
individuating, they might not believe the evidence their
parents and doctors present that these are merely symptoms of
the illnes, and not a manifestation of who they really are.
How terrifying this is can be for parents!

A child’s illness may call on parents to grow in unaccustomed
ways. Parents may find themselves thrust into situations
beyond their own comfort level, needing to be more assertive
with previously trusted school and medical authority figures
or more conciliatory with insurers and others, in order to
acheive important goals. The needs of their children often
push parents far beyond their comfort zone in these areas. It
is important that parents recognize where that comfort zone
is, and work to move beyond it, for the sake of their child,
and his recovery.

In this complex, demanding world, we need to have compassion,
empathy, and understanding for those who are struggling to

raise children who have chronic Lyme disease. If we can
appreciate the challenges that face them, and respect their
decisions, perhaps we can make their world a little bit
brighter.

Parenting Strategies from the Trenches

After years of helping parents, children, adolescents and
families deal with some of these issues, I have developed the
following strategies, to help parents ease their journey:

• Maintain a problem-focused approach as you make decisions
about diagnosis, doctors, and treatment.

• Work at developing a consensus between you and your child’s
other parent, whether or not you are still together!

• Stay focused on current problems to be solved, and keep
worries on the back burner.

• Explain what’s going on to your child in concrete, age-
appropriate terms.

• Maintain your credibility with your child by being truthful.

• Be careful with the words you use. Avoid words like
"psychotic episode", "manic", or "incurable". Lyme disease is
a scary illness. Keep your words from making it scarier.

• Be firm when you need to be, but give choices when you can,
lots of choices.

• Establish and maintain protective boundaries, protecting
yourself and your child from family members and friends who
doubt your judgment and parenting decisions. Let others know
what they can and cannot say.

• Build a supportive network – educate your family and friends
about Lyme, but don’t overload them. Remember, this is your
issue, not theirs.

• Be open to support, but make it clear that you’re not open
to being second-guessed. Allow people to help in concrete ways
when you’re overwhelmed. Let them make meals, pick up the
kids, or shop for groceries..

• Psychotherapy or family therapy, with a Lyme-knowledgeable
therapist, can be an important adjunctive treatment, to help
you and your children get through the hard times without
residual damage. The model I use is helping Lyme patients and
their families go from being victims, to survivors, to
thrivers. There’s nowhere that this model is needed more than
with families coping with Lyme disease.

Click here for printable pdf of article.

Published in Lyme Times Children’s Treatment Issue #42 –
Summer, 2005

Sandy Berenbaum, LCSW, BCD Family Connections Center for
Counseling

Offices in Brewster, NY and Southbury, CT www.lymefamilies.com

Ph: (203) 240-7787 Fax: (203) 405-6200

© 2005

Berenbaum-Canon Lyme Disease
Screening Protocol
1.       History of changes in:

      behavior at home, school, or in other settings
      school performance or attendance
      sleeping and eating patterns
      socialization patterns, or dramatic change in peer group
      mood

                  o    depression
                  o    anxiety
                  o    temper flare-ups
                  o    suicidal ideation or gestures
                  o    intensification of PMS

2.      History of changes in activity level, that could be suggestive
     of Lyme disease
     Sudden loss of interest, or inability to participate in activities,
     such as organized sports, music, dance, drama, youth group, etc.

3.      A discreet point in time at which problems began

4.      History of onset of other psychiatric symptoms (panic attacks,
     hallucinations,      attentional     problems   not   present   in   early
     childhood)

5.       History of use of psychiatric medications, with either no
     success in symptom reduction or a paradoxical response

6.      History of any physical illness (flu, mononucleosis, bronchitis)

occurring prior to start of psychiatric, learning or behavioral
       problems

  7.      History of short term antibiotic treatment for medical problem
       (strep infection, etc.) with temporary improvement of symptoms

Click here for printable pdf

Sandy Berenbaum, LCSW, BCD Family Connections Center for
Counseling

Offices in Brewster, NY and Southbury, CT www.lymefamilies.com

Ph: (203) 240-7787 Fax: (203) 405-6200

© 2002

Kids And Lyme Disease – How
It Affects Their Learning
Introduction: There is an urgent need for Lyme disease
education and awareness in the schools throughout the United
States. In addition to the "ABC’s of Lyme," and the new "Time
for Lyme" video, Lyme professionals – physicians,
psychotherapists, neuropsychologists, need to be seeking
opportunities to provide in-service training to schools, so
that teachers and other school professionals understand and
appreciate the difficulties that face kids with Lyme every
day. We need to call on the schools to help these children,
and education is the key.

The following is a presentation I gave to the Northern
Dutchess County (NY) Support Group in November 2002. Perhaps
it will provide ideas for other presentations to Lyme groups
and schools around the country. Every child with Lyme disease
should feel understood and supported, and be successful in
school. Lyme disease may be a handicap that some children
have, but it should not be an insurmountable obstacle.

Click here for printable pdf

When my colleague, Lynne Canon, and I started our private
practice 16 years ago, we did so with a commitment to
providing psychotherapy and family therapy to adolescents and
their parents. For five years, we did just that, with no
thought that a medical illness might be at the root of the
psychiatric, behavioral or learning problems some of these
kids might have.

Then, in 1991, a client was referred to us who had a profound
effect on us, and on our practice. I will call him "Jim".

Jim was a 15 year old boy who refused to go to school. He was
paranoid, fearing that people were out to get him as well as

his family, and he could not sleep at all. His parents
reported that he had been an honors student up to a few months
prior to our first session, but now, when he did go to school,
he failed every test he took. He appeared to be physically fit
and well disciplined. He was even skilled in the martial arts.

On Intake, we asked standard history and family history
questions. We found Jim to be a very verbal and engaging young
man, obviously bright, and a deep thinker. We saw agitation,
restlessness, and anxiety, as well as the paranoia reported by
his parents.

Toward the end of our initial interview, we asked about his
hobbies. With great enthusiasm, Jim told us about his
volunteer work at an environmental center here in Dutchess
County, and of his hopes for a career involving environmental
studies.

Jim was a real puzzle to us. We were faced with a set of
symptoms and functional problems that made no sense, even in
examining his history. Realizing that there had been a
dramatic onset of symptoms at a particular point in time, and
that Jim had spent so much time out of doors in what we now
see as the Lyme capital of the universe, we referred him to
his family doctor for a Lyme assessment.

His pediatrician took a titer, which came back "negative",
(any of you parents have that experience?) indicating to this
doctor that Lyme was not a factor! That road appearing closed,
we continued to see Jim, as well as his parents, and watched a
steady decline in Jim’s functioning. He could not go to
school, and was placed on home teaching. His parents and we
were completely baffled.

2As Jim’s symptoms got worse, we thought he might have to go
into a psychiatric hospital. In a last quest for a possible
medical answer, we suggested that his parents take him for a
consultation to a pediatrician who we knew to be Lyme-

knowledgable.

On the day that consulting doctor saw Jim, he called to tell
us that he had made a CLINICAL DIAGNOSIS of Lyme disease, a
diagnosis based on Jim’s clinical symptoms, NOT on a blood
test. The doctor prescribed Ceftin, a drug that crosses the
blood brain barrier, attacking spirochetes that were in the
brain.

Within three days, Jim’s paranoia disappeared. He admitted to
having had hallucinations, and they too were gone. He was now
sleeping 14 or more hours a day, and for the first time, had
joint pain, as part of a Jarisch Herxheimer reaction to the
antibiotics, a reaction in which the symptoms temporarily get
worse. Thus began Jim’s long struggle with what turned out to
be chronic Lyme disease.

Jim went from being a teenager who could not attend school,
could not participate at all in the educational process, was
failing all tests, to a good student at one of the best
colleges in the New York State system. He went from being a
very sick kid, who was on homebound instruction for a year and
a half, to a college graduate. He was helped by a supportive
family, a Lyme-literate doctor, who treated him effectively, a
school administrator who accepted the fact that he was,
indeed, ill, and a school system that provided accommodations,
to help him succeed.

—————————————

Most of you know that Lyme disease is a multi-system illness.
Someone with Lyme can have joint pains, heart problems,
stomach problems, any kind of physical manifestation. I’d like
to focus this evening on the neurological and neuropsychiatric
problems, the ones that have the greatest effect on learning,
and the ones that lead to the greatest misunderstandings
between parents and school professionals.

Most common with children and adolescents who have chronic

Lyme are intense headaches that can last for days, cognitive,
attentional and mood problems, profound fatigue, and
difficulty sleeping. Many kids have problems with vision, or
visual and auditory overstimulation. Some have a sensitivity
to flourescent lighting.

Some of these symptoms may be very subtle, so it is difficult
for the teachers to realize that they are dealing with a sick
child, rather than a child who is daydreaming, or simply
trying to avoid his school work.

Once a child has been diagnosed, and is undergoing treatment,
there are problems produced by the treatment itself. High
doses of antibiotics and other medications the child may be
taking can produce gastointestinal problems. The child may be
uncomfortable, and complaining a lot, particularly of stomach
aches. Since young children sometimes complain of stomach
aches to avoid academic projects (I remember my stomach
hurting in 3rd grade every time I had to speak

3

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 worse,
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

4

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

5

• 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 problems 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 • Incomplete
assignments and tests • Behavioral problems at school •
Withdrawal from peers (particularly when peers fail to
understand how sick

the Lyme patient is)

• Situation-induced mood problems (aside from the mood
problems coming from the infection itself)

• Weight gain or loss, at times, dramatic • Mood swings,
inappropriate verbal outbursts,

increasing conflicts in all settings

(In general, kids and adolescents do not have a high degree of
frustration tolerance. We all know that. Lyme disease severely
challenges the child’s already-limited resources)

What, then, might the child do to COMPENSATE for what is going
on?

(these are what I call the "self-selected solutions")

All that I have discussed so far is distressful for the child.
She may try to cope with all of this by doing any of the
following:

• As school performance falls, and they’re less involved with
activities, Lyme patients might shift to a lower-functioning
peer group, cut classes, and, in the extreme, they might drop
out of school (if over 16), to avoid the frustration of

dealing with academic demands

• For the kids with GI problems, they might severely limit
their food intake, or begin gorging and purging

6

• Self-Medicate • For energy, or to self-treat the attentional
problems,

they might use stimulants or cocaine

• To calm them down, or to keep them from thinking about all
that is going on, alcohol, marijuana or other drugs might be
chosen

I have seen all of the above in adolescents with chronic Lyme
in my practice.

Any of the functional impairments can lead to any of the
results, and to any or all of the self- selected solutions.

Functional impairments in school are often very significant,
and call on the educators to develop creative plans to help
the student with Lyme succeed. Without the support of the
school, the best efforts of the parents might not be enough to
keep a kid on track, in school, and successful!!

——————————————–

What THERAPEUTIC SOLUTIONS might we offer, to help deal with
the FUNCTIONAL IMPAIRMENTS?

Please note that these solutions do NOT directly connect with
any particular item in the previous column.

There are different categories of therapeutic solutions, but
for now, I’d like to focus on what the school can do. They can
make the difference between success and failure for a child
with chronic Lyme.

We see several listed on this slide. I’ll mention others
later. They DO WORK, and most of them are not very costly for
the district or the state:

For example,

• The length of the school day • Time school day begins and
ends • Length of homework assignments • Length and location of
tests • Physical education requirements

(as well as other accommodations)

I’ll just mention briefly another important area where there
can be therapeutic solutions, the home front:

7

Always keep in mind that when your child has chronic Lyme, he
needs to be both SUPPORTED and ENCOURAGED. It’s important that
you base your expectations of him on how he is able to
function, on a day to day basis, but you don’t want him to
feel like, or function like, an invalid. Have expectations of
him, but keep them in line with where he is in his medical
treatment, as well as whether he’s having a good day or a bad
day.

Some families need help dealing with children with Lyme,
particularly if it effects their brain, and their school
functioning. That is where psychotherapy and family therapy
can be helpful. Therapy can serve an important role for kids
and families with chronic Lyme, but it’s important to find a
therapist who is at least Lyme-open, if not Lyme-literate. The
kid and the parents should be involved, in a combination of
individual and family therapy. The therapy should be concrete,
focusing on the problems.

————————————-

Now lets look more specifically at school.

As I mentioned earlier, cognitive problems are common with
kids with Lyme disease, as are attentional problems.

Kids with chronic Lyme might find it hard to        retain new
information. Lyme also can effect receptive and      expressive
language, visual-spatial processing, abstract        reasoning,
processing speed. Just as Lyme disease can effect   any part of
the body, it can effect any cognitive process.

These kids may appear to be distracted easily, have poor
concentration, appear scattered, have just about any symptom
of attention deficit disorder. Or if the child had ADD before
she got Lyme, her ADD symptoms are often exaggerated by the
illness.

These symptoms might be intermittent and transitory, given the
nature of Lyme disease, making it even more difficult to
develop an education plan. When I speak to teachers’ groups, I
tell them that when they have a child with chronic
neurological Lyme in their class, the child may appear
learning disabled one day, seem normal the next. She may act
like she’s got ADD on another day, and may appear withdrawn
and fatigued the next. It’s a real challenge for the classroom
teacher!

So what can be done to educate these children?

First lets look at the issue of free and equal public
education, a wonderful and radical gift our democracy has
given us.

Free and equal public education gives all children a right to
an education in this country, this state, this county. The law
protects the disabled through entitlements, to level the
playing field, so that they can benefit from an education,
just as those who are not disabled can. There are state and
federal bodies of law that provide for those entitlements, and
they are available to all those who are disabled. They are not
granted at the discretion of anyone – the teacher,

administrator, school superintendent!!

8

Some of these benefits are costly. There is always a push on
the part of those responsible for balancing budgets to protect
our tax dollars. There is always controversy regarding which
programs should be prioritized. The result is that not all
entitlements are easily gotten by those entitled to services.
But parents of kids who are seriously ill with Lyme disease
need to know that these entitlements exist, and that it is
YOUR CHILD‘S RIGHT TO HAVE ACCOMMODATIONS, AS LONG AS THERE IS
EVIDENCE THAT THEY ARE NECESSARY.

I’d like to discuss three stages of supports the schools can
provide. Most children will only need the first stage, and
when a school is cooperative, coming from an understanding
that these children are indeed ill, and that the school can be
a partner in their recovery, the first stage might be all that
is needed.

The first stage is "Informal Educational Supports." These are
supports that can be given to children without any formal
plans, without classification, without formal meetings.

A school administrator, for example, knowledgeable about the
child’s illness, and the resulting impairments, might
carefully select a classroom teacher or teachers that can
develop flexible schedules for a child, permanently excusing a
percentage of the required homework, giving extra time for
testing, seating a distractible child near the source of
instruction. These teachers give support and encouragement,
without blaming the child for erratic performance.

Depending on their teaching styles, some teachers have an
easier time providing this flexibility than others, and if the
administrator realizes this, and appropriately matches the
child’s unique needs to the particular teacher, problems can
be avoided from the beginning. Late assignments can be

accepted, without penalty, misspelling on tests that are not
spelling tests can be excused.

There is no battle ground here between the school and the
parents. All are partners in providing this child with the
education she deserves, and there is little if any cost to the
school district, or to the state.

There are two reasons why informal accommodations don’t always
work.

The first is that the school refuses to believe that this
child, who looks healthy, or is laughing with his friends in
the hall, is in fact sick. Parents should certainly be
prepared with documentation, to back their assertion that
their child has an illness that effects her learning – clear
detailed letter from the treating doctor, neuropsychological
evaluation, even brain SPECT scan, if there is one. The child
has a right to an education, but the school has a right to the
evidence that a medical problem that effects learning DOES
exist.

The second reason that informal supports might not work is
that the child needs more than can be provided without a
formal plan. If this is the case, a 504 committee needs to be
convened, and a 504 plan is put into place.

Section 504 is Federal civil rights legislation. Under it, a
child with a disability has a right to accommodation to
compensate for the disability. And, as I said earlier, it is
an entitlement.

9

By law, a letter from the treating physician should be all
that is needed in order to convene a 504 meeting, and develop
a 504 plan. This is the easier of the two types of
accommodations to put into place, and usually leads to a
quicker meeting, therefore accommodations begin more quickly.

If the 504 does not seem to be working, if it does not provide
for adequate accommodations, then a parent can request the
Committee on Special Education to meet. A child with a health
problem qualifies to be classified Other Health Impaired, an
IEP (the plan for the child), is put into place, and supports
are written into the plan. Supports available with an IEP that
are not usually available under 504 include Resource Room,
regular counseling for the child with a the school social
worker, and school psychological evaluation every three years,
as long as the child remains classified.

———————————-

Here are some of the accommodations that might be put into
place, and how I’ve seen children helped by these
accommodations. Some may require that a neuropsychological
evaluation document the particular learning problem that leads
to the need for the accommodation.

• Unlimited time for testing – a child is afforded extended
time to take tests. Some children with Lyme have problems with
the speed of processing information. These children get
exceedingly anxious, trying to take a timed test. This
accommodation removes the anxiety, literally gives them enough
time to think.

• Separate testing location – this is appropriate for children
who have problems with focusing and concentration, and are
easily distracted. There are fewer children taking the test,
in a quiet location.

• Tests read to student – this is for students who have
particular verbal learning problems, in which their auditory
learning is less impaired than their visual learning.

• Excused from a percentage of their homework. Children with
profound fatigue, who have a difficult time just getting
through the school day, benefit greatly from having less work
to do at home.

Keep in mind that more school work is not necessarily better.
If a child is fatigued and has problems with memory and
organization, of what use is hours worth of homework, at the
end of the school day, or on the weekend? Of what benefit is
increasing the child’s anxiety by requiring that he/she
perform equal to the children who are well? Are they really
being treated equally, if the child who is well can do the
work in 1/4 to 1/2 the time as the child who is ill? Shouldn’t
the sick child have at least an equal right to down time, time
to relax, and recover, to face the next learning challenge?

There are long lists of accommodations, designed to fit the
needs of disabled children. Those with chronic Lyme, where
documentation supports the problems and the need, are entitled
to

10

these accommodations. Those who say it gives these kids an
edge, rather than levelling the playing field, have never
known someone with chronic Lyme. I suggest to those people
that if these accommodations provide an edge for these kids,
then so do hearing aids and eyeglasses. Ask everyone with
those disabilities to do their work without those particular
accommodations, as well!!!

One more thing – you parents have a very important job in this
process with the school – advocating for your child.

Meetings with the school professionals can be very
intimidating. They’ve got formats to follow, protocols,
guidelines required by law to follow, for the very design of
the meeting. They are used to these meetings. You are NOT –
often leading to a very uncomfortable situation for parents.

Go into the meeting prepared. Take your documentation, know
what your child’s needs are, and DON’T GIVE UP!! If you don’t
get support from the school the first time around, find a
support group for parents of classified kids, attend meetings,

network with parents who have been dealing with their
children’s schools for years. They have an expertise in
education law, and they are very willing to help you. Someone
from the group may even be willing to attend the meeting with
you. You are entitled to bring anyone you wish. Take advantage
of it.

It’s not always an easy path, but you already know that about
Lyme disease. It’s unfortunate that yet another part of the
environment can be so difficult to negotiate for families with
Lyme, but for right now, until there is a greater
understanding of Lyme in the education community, that’s the
way it is. So just remain in your child’s corner, and don’t
give up!!

Click here for printable pdf of article.

Article Printed in Lyme Times Fall/Winter 2002-3 Issue

To subscribe, contact:   Lyme Disease Resource Center PO Box
707 Ukiah, CA 95482

1 yr (4 issues) domestic $35

Sandy Berenbaum, LCSW, BCD Family Connections Center for
Counseling

Offices in Brewster, NY and Southbury, CT www.lymefamilies.com

Ph: (203) 240-7787 Fax: (203) 405-6200

© 2002

Identifying                              Lyme                  In     The
Schools
How a child or adolescent with undiagnosed Lyme Disease might
present to:

The Teacher

         · Lethargy, fatigue        · Difficulty remaining in class

 · Moodiness, depression, anxiety      · Early morning absences

     · Withdrawal from peers        · Erratic academic performance

  · Headaches or other physical
                                          · Declining grades
            complaints

      · Behavioral problems            · Attentional disorders

      · Speaking and writing           · Poor concentration and

            difficulty                          memory

  · Declining school attendance               · Tardiness

The School Nurse

      · Frequent headaches           · Gastrointestinal symptoms

    · Joint pain, twitching              · Vision Problems

                                     · Depression, anxiety, mood
  · Dizziness, disorientation
                                               swings

      · Sleep disturbance                   · Severe PMS

· Sensitivity to sound, light, or
                                         · Profound fatigue
       other stimulation

The Guidance Counselor

   · Difficulty maintaining a full       · Decline in academic

    schedule                                  performance

  · Erratic attendance, tardiness       · Withdrawal from peers

                                           · Change to lower
  · Difficulty remaining in class
                                        functioning peer group

        · Behavior problems

Note: Lyme disease symptoms may be persistent or transitory.

Click here for printable pdf of article.

               Sandy Berenbaum, LCSW, BCD
               Family Connections Center for Children
               Offices in Brewster, NY and Southbury, CT
               www.lymefamilies.com
Ph: (203) 240-7787 Fax: (203) 405-6200

© 2005

Deaths from Lyme Disease
Lyme disease can cause deaths. The chart below shows numbers
of deaths from Lyme disease and from Rocky Mountain spotted
fever (RMSF) (link to our RMSF page), another tick-borne
disease considered to be very serious. The numbers are taken
from the Centers for Disease Control and Prevention for the
years 2002 through 2007.

Tick Control Measure Moves
into 2012
Controlling ticks on property is something that government
entities and the general public can do to help stop the spread
of Lyme and tick-borne diseases. Now we have a device backed
by scientific studies published in peer reviewed scientific
journals. The device has been around a long time under a
different name and has now been registered with EPA under a
new name.

Select TCS Tick Control System, formerly The Maxforce Tick
Management System, is now EPA registered by Tick Box
Technology Corporation based in Norwalk, CT. The owners of the
company have tick control companies in five states.

The TCS kills ticks during larval and nymph stages when they
are contracting the Lyme bacteria and other tick-borne disease
organisms from small rodents such as mice and chipmunks,
interrupting the transmission of tick-borne diseases.
Pesticide safety is always a concern to homeowners, and this

system minimizes that usage.

The Select Tick Control System is now registered and available
in Connecticut, Rhode Island, New Jersey, Minnesota,
Pennsylvania, New York, Delaware, Maryland, Tennessee,
Arizona, Iowa, Kansas , Virginia and New Hampshire. Other
states may soon register the device. Go to www.TICKBOXTCS.COM
for more information.

NOTE: LDA does not endorse products nor is it affiliated with
Tick Box Technology Corporation.