Pediatric Lyme Disease Through a Parent’s Eyes
Lyme Science Blog
Jan 16

Pediatric Lyme Disease: Why Children Are Misdiagnosed

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Pediatric Lyme Disease: Why Children Are Frequently Misdiagnosed

Pediatric Lyme disease rarely looks like the textbook descriptions clinicians learn in medical school. While adults typically present with fatigue and joint pain, children often develop sudden behavioral changes, academic struggles, and psychiatric symptoms that get attributed to everything except infection.

This diagnostic blind spot means many children spend months—or years—being treated for ADHD, anxiety, or “growing pains” when the actual cause is tick-borne illness.

When Academic Success Disappears Overnight

Note: Patient details have been modified to protect privacy. This case represents a composite of typical pediatric Lyme disease presentations I have observed in clinical practice.

Maya had never struggled in school. At 13, she was in advanced classes and maintained close friendships. Two weeks after a family camping trip in upstate New York, everything changed.

First came severe headaches. Then she started forgetting homework assignments. Within a month, she was crying over math problems she used to finish easily, snapping at her parents, and complaining that her knees hurt.

Her pediatrician found nothing. Blood work was normal. “Probably just stress,” the doctor suggested. “Maybe anxiety about high school.”

A therapist mentioned ADHD—something that had never been an issue. The school recommended anxiety accommodations.

Maya’s mother kept a detailed journal. She noticed what specialists hadn’t connected: the timing. Every symptom started within two weeks of that camping trip. She reviewed photos and found one showing a faint circular rash on Maya’s back.

When she brought this to a clinician familiar with tick-borne illness, Lyme testing was ordered. Initial serology came back negative. But clinical evaluation—considering the rash, timeline, and symptoms—led to a diagnosis of neurologic Lyme disease.

Six months later, Maya was back in advanced classes, functioning at baseline. But what if her mother hadn’t kept that journal?

This pattern happens regularly. Pediatric Lyme disease frequently presents as behavioral or academic decline—and standard approaches miss it.

How Pediatric Lyme Disease Differs from Adult Infection

Children’s presentations are often more abrupt and dramatic than adults.

Behavioral and cognitive changes dominate. A well-adjusted child suddenly develops anxiety, obsessive behaviors, or academic difficulties. These get attributed to developmental phases or psychiatric conditions—delaying recognition of infection.

Joint pain gets dismissed. The migratory nature of Lyme arthritis—affecting different joints at different times—is labeled “growing pains.”

Fatigue is called laziness. Parents hear their child needs better sleep hygiene. The profound exhaustion of tick-borne illness is mistaken for poor habits.

Symptoms fluctuate. A child appears well one week, severely symptomatic the next. This inconsistency makes it hard to convince clinicians something serious is happening.

Why Diagnosis Fails

Testing Is Unreliable in Children

Antibody-based testing—already imperfect in adults—may be less sensitive in children. Developing immune systems produce slower, weaker antibody responses. False negatives are common in early infection, exactly when treatment would help most.

Yet negative results end inquiry, even when symptoms persist.

Symptoms Get Misattributed

The overlap between Lyme disease and common childhood diagnoses creates predictable patterns:

  1. Academic struggles → ADHD evaluation
  2. Mood changes → psychiatry
  3. Joint pain → growing pains
  4. Fatigue → behavioral problems

Each specialist sees one piece. No one asks whether a single infection explains the entire pattern.

Tick Exposure Goes Unnoticed

Children are less likely to notice or report tick bites. Rashes on the scalp or back go unseen. Brief outdoor activities get dismissed as “low risk.”

Without documented exposure, Lyme disease never enters the differential.

Neuropsychiatric Symptoms and PANS

Some children develop acute-onset psychiatric symptoms. PANS—Pediatric Acute-onset Neuropsychiatric Syndrome—describes sudden OCD behaviors, anxiety, emotional outbursts, tics, and sensory issues.PANS is a clinical syndrome with multiple potential triggers, and tick-borne infection should be considered as part of a broader differential—not assumed as the sole cause.

Evidence suggests Lyme disease and co-infections can trigger these symptoms through immune activation affecting the brain.

In my practice, children with sudden OCD, rage episodes, or severe anxiety following tick exposure often improve with treatment for tick-borne illness—not psychiatric medication alone.

When neuropsychiatric symptoms appear abruptly in a previously well child, especially after potential tick exposure, tick-borne illness should be evaluated alongside psychiatric causes.

Co-infections Add Complexity

A single tick bite can transmit multiple pathogens. Babesia causes air hunger and anxiety mistaken for panic disorder. Bartonella produces neurologic symptoms and mood changes. Anaplasma causes febrile illness dismissed as viral.

Standard Lyme testing doesn’t detect co-infections. When treatment produces an incomplete response, co-infections should be reconsidered.

Early Recognition Changes Everything

Treatment before symptoms become entrenched produces better outcomes and shorter treatment courses. Academic and social disruption can be prevented.

For Maya, early treatment restored her cognitive function. But six months of confusion and struggle could have been prevented with earlier recognition.

Early diagnosis doesn’t guarantee perfect outcomes. Some children have lingering symptoms. But it provides the best opportunity for full recovery.

Trust Parents, Question Assumptions

Pediatric Lyme disease presents differently than adult infection and requires clinical vigilance standard approaches don’t provide.

When behavioral changes, academic decline, or unexplained symptoms appear—especially after outdoor exposure—clinical suspicion should remain high even when testing is negative.

Parents often recognize patterns before clinicians because they observe the whole child across all contexts. That perspective has clinical value and deserves partnership, not dismissal.

The question isn’t whether every symptom represents Lyme disease. The question is whether the possibility is considered when patterns suggest it—and whether negative serology prematurely ends inquiry.

Frequently Asked Questions

What are the most common presentations of pediatric Lyme disease?

Behavioral changes, academic decline, joint pain, headaches, and profound fatigue—often overlapping with other childhood conditions.

Can Lyme disease cause sudden psychiatric symptoms in children?

Yes. Some children develop acute OCD-like behaviors, mood changes, or rage episodes linked to PANS when immune activation affects brain function.

Are Lyme tests accurate in children?

Antibody tests may be less sensitive in early pediatric infection. Clinical diagnosis shouldn’t rely solely on serology.

How is pediatric Lyme disease different from adult infection?

More prominent neurologic and behavioral symptoms, more abrupt onset, greater overlap with psychiatric diagnoses, and more frequent symptom fluctuation.

What should I do if my child has tick exposure but no rash?

Consult a provider familiar with tick-borne illness. Monitor for symptoms and consider whether prophylactic treatment is appropriate.

Can children fully recover from Lyme disease?

Most children treated early recover completely. Delayed diagnosis may lead to prolonged symptoms, but appropriate treatment still produces favorable outcomes.

Links:

Infectious Disease Clinics of North America.  Lyme Disease in Children. McCarthy CA, Helis JA, Daikh BE. 2022 Sep;36(3):593–603.

Infectious Disease Clinics of North America.  Lyme Disease in Children. Sood SK. 2015 Jun;29(2):281–294.

 

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