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Chronic Lyme Disease in Kids

In an ambulatory care setting, the nurse often spends as much or more time with the child than the physician.

Vol. 3 •Issue 22 • Page 25

Lyme disease, a tick-borne disease named for the town of Lyme, CT, where the first U.S. outbreak occurred, is present in every state and is more prevalent than most people realize. The so-called deer ticks that transmit the infection are so tiny that they frequently are not detected by unsuspecting victims.

Only about 40 percent of bites are followed by the tell-tale "bull's eye" rash; consequently, the early, acute and easily treatable phase of the illness often is missed.1 Months to years later, children can present with a host of seemingly unrelated and puzzling symptoms that parents and doctors often 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 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 healthcare providers.

Subtle Symptoms

The symptoms of chronic Lyme disease in children are subtle and can be easily missed or confused with other illnesses.3 These children often present with a history of such diagnoses as juvenile rheumatoid arthritis (JRA), hypercholesterolemia, migraines, Crohn's disease, gastritis, maturation delay, ADHD and learning disabilities. The nurse should be skeptical of a previous diagnosis of JRA, especially if the child also has been diagnosed with ADHD and/or migraines.4

Children with tick-borne diseases also have a history of symptoms that do not neatly fit into any diagnostic category. Some 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;5

• clumsiness;

• frequent "growing pains;" and

• insomnia unresponsive to the usual treatments.

'Red Flag' Issues

When questioning a child about symptoms, the nurse should be suspicious when parents report 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 don't know what it means for them not to. A parent may say "he vomits 3 or 4 times a week." The child may neglect to mention this because he has become accustomed to it and thinks this is normal.

The parent may report the child is moody and unpredictable and 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 be suspected.

Note Behavioral Changes

The parent also may report 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, or the calm child has started throwing fits and tantrums. The nurse should take note when there is a change in the child's usual behavior.2

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

Ask Environmental Questions

The nurse should ask about the child's 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 won't 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 don't sound suspect for tick exposure, inquiries should be made regarding the mother's health status. If the mother says she has been diagnosed with fibromyalgia or chronic fatigue syndrome, or she's had vague complaints of joint pain and fatigue since before the child was born, a congenital Lyme case may be a possibility.6

In assessing the child, the nurse may notice a tendency toward distractibility and hyperactivity.3 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 child's lower leg to kick forward.

Child's Advocate

Nurses are the parent's and child's first contact in the doctor's office. They can form a strong relationship with the parent and bond with the child. They are the child's 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.


1. Johnson, L., & Stricker, R.B. (2004). Treatment of Lyme disease: A medicolegal assessment. Expert Review of Anti-Infective Therapy, 2, 533-557.

2. Fallon, B.A., et al. (1998). The underdiagnosis of neuropsychiatric Lyme disease in children and adults. Psychiatric Clinics of North America, 21, 693-703.

3. Adams, W.V., et al. (1999). Long-term cognitive effects of Lyme disease in children. Applied Neuropsychology, 6, 39-45.

4. Steere, A.C., et al. (1977). Lyme arthritis: An epidemic of oligoarticular arthritis in children and adults in three Connecticut communities. Arthritis & Rheumatism, 20, 7-17.

5. Fried, M., Duray, P.H., & Pietrucha, D. (1996). Gastrointestinal pathology in children with Lyme disease. Journal of Spirochetal and Tick-borne Diseases, 3, 101-104.

6. Gardner, T. (2000). Lyme disease. In J.S. Remington & J.O. Klein (Eds.), Infectious diseases of the fetus and newborn infant (pp. 447-528). Philadelphia: W.B. Saunders.

Ginger Savely specializes in treating patients with tick-borne diseases in her practices in Austin, TX, and San Francisco. 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.


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