LYME DISEASE IN CHILDREN

Nurses can learn to see the Red Flags

By Ginger Savely, FNP-C

Lyme disease, a tick-borne disease named for the town of Lyme,

Connecticut where the first U.S. outbreak occurred, is present in every
state and is more prevalent than most people realize. Ticks that
transmit the infection are so tiny that they are frequently not detected
by unsuspecting victims. Only approximately 40% of bites are followed
by the tell-tale bulls eye rash and consequently the early, acute and
easily treatable phase of the illness is often missed.[5] Months to
years later, children can present with a host of seemingly unrelated
and puzzling symptoms that parents and doctors do not associate with
past exposure to ticks. Thus the possibility of chronic disseminated
Lyme disease is usually not entertained. [2]

In an ambulatory care setting the nurse often spends as much or more

time with the child than does the physician. While taking vital signs and
gathering preliminary information from the parent, the nurse is in
a unique position to pick up on red flags for chronic disseminated
Lyme disease. Since most doctors do not think to include this
disease in their differential assessment, [2] heightened awareness on
the part of the nurse could make a significant difference in
determining the correct diagnosis.

The nurse should put up her Lyme radar when a child is a frequent
visitor to the office, has many and varied complaints, or has symptoms
that have eluded diagnosis by other health care providers.

The symptoms of chronic Lyme disease in children are subtle and can
be easily missed or confused with other illnesses. [1] These children
often present with a history of such diagnoses as juvenile rheumatoid
arthritis (JRA), hypercholesterolemia, migraines, Crohns disease,
gastritis, maturation delay, attention deficit/hyperactivity disorder
(ADHD) and learning disabilities. The nurse should always be skeptical
of a previous diagnosis of JRA, especially if the child has also been
diagnosed with ADHD and/or migraines. [6]

Children with tick-borne diseases also have a history of symptoms that

do not neatly fit into any diagnostic category. A few of these are: low
energy in the absence of anemia; frequent urination in the absence of
a urinary tract infection; visual problems with a normal ophthalmologic
exam; stomach pains, vomiting and abdominal cramping without
obvious pathology [3]; clumsiness; frequent growing pains and
insomnia unresponsive to the usual treatments.

When questioning a child about symptoms, the nurse should always be

suspicious when the parent reports that the child has frequent and
significant symptoms but the child claims he does not. Children who
have been sick for a long time, and especially those who have been
sick their entire lives (such as children with congenital Lyme disease),
do not recognize pain and other discomforts as abnormal. If your
knees have always hurt, you really dont know what it means for them
NOT to. The parent may say he vomits three or four times a week.
The child may neglect to mention this because he has become
accustomed to it and thinks that this is normal.

The parent may report that the child is moody and unpredictable and
that he has frequent headaches and stomach aches. He will often
report to the school nurse not feeling well and bring home notes for
poor behavior. The child with Lyme disease usually has a high number
of school absences. If a child is sick frequently and the parent reports
he comes down with everything that goes around, immune
suppression due to chronic infection should always be suspected.

The parent may also report that the child has had a sudden change of
behavior. The quiet child has become loud and aggressive, the active
child has become passive, the happy child has become weepy and sad,
the calm child has started throwing fits and tantrums. The nurse
should always take note when there is a change in the childs usual
behavior. [2]

The parent should be asked if the child has ever had a tick
attachment, even if the popular belief is that the area does not have
ticks that carry disease. If the child has ever had rashes of any kind,
the parent should be asked to describe these in detail.

The nurse should be sure to ask about the childs environment, habits
and activities. Questions may include: are there wooded areas near
the home, are there deer around, does the child play out in the grass,
does the family go camping, do they have pets, are tick checks
routinely done, has the family traveled to highly tick-endemic areas?
Often parents wont recall a tick bite, but if there is exposure potential,
there may have been a bite that went unnoticed because it was in the
hair or another part of the body that was difficult to see.
If environmental factors dont sound suspect for tick exposure,
inquiries should be made regarding the mothers health status. If the
mother says that she has been diagnosed with fibromyalgia or chronic
fatigue syndrome, or that shes had vague complaints of joint pain and
fatigue since before the child was born, a congenital Lyme case may
be a possibility.[4]

In the assessment of the child the nurse may notice a tendency

towards distractibility and hyperactivity. [1]It is often difficult to get
the child to stop talking or sit still long enough for vital signs to be
taken. The child may be hypersensitive to touch and may wince when
the blood pressure is taken. He may avert his eyes to the light of an
opthalmoscope or complain that the lights in the room are too bright.
Reflexes may be so brisk that even brushing against the leg will cause
the childs lower leg to kick forward.

Nurses are the parents and childs first contact in the doctors office.
They can form a strong relationship with the parent and bond with the
child. They are the childs advocate. Since nurses have acute
observation skills, they would do well to become vigilant to the red
flags of Lyme disease. They can then encourage the physician to take
note of relevant history and symptoms and to pursue the possibility of
tick-borne disease.

The author specializes in treating patients with tick-borne diseases in her

practices in Austin, TX and San Francisco, CA. She is a member of the
International Lyme and Associated Diseases Society and has treated
hundreds of children and adults with chronic Lyme and other tick-borne
diseases.

References:

1. Adams WV, Rose CD, Eppes SC, Klein JD. Long-term cognitive
effects of Lyme disease in children. Appl Neuropsychol
1999;6:39-45.

2. Fallon BA, Kochevar JM, Gaito A, Nields JA. The underdiagnosis of

neuropsychiatric Lyme disease in children and adults. Psychiatr
Clin North Am 1998;21:693-703, viii.

3. Fried, MD, Duray, PH, Pietrucha, D. Gastrointestinal pathology in

children with Lyme disease. J Spiro Tick Diseases 1996;3:101-
104.
4. Gardner, T. Infectious Diseases of the Fetus and Newborn Infant.
Chapter 11: Lyme Disease. 2000. WB Saunders: Philadelphia,
PA.

5. Johnson L, Stricker RB. Treatment of Lyme disease: A medicolegal

assessment. Expert Rev Anti-Infect Ther 2004;2:533-57.

6. Steere AC, Malawista SE, Snydman DR, et al. Lyme arthritis: an

epidemic of oligoarticular arthritis in children and adults in three
Connecticut communities. Arthritis Rheum 1977;20:7-17.