berenbaum%20Kids%20and%20Lyme.pdf

KIDS AND LYME DISEASE

HOW IT AFFECTS THEIR LEARNING

Sandy Berenbaum, LCSW, BCD

Family Connections Center for Counseling

Lyme Times

Fall/Winter 2002/3

Offices in Fishkill and Brewster, NY

(845) 259-9838

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Lyme Disease Resource Center

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PO Box 707

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.

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.

As 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.

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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 3 rd grade every time I had to speak

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 wrose, 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.

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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:

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)

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

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 5 th 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.

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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

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