Lyme Treatment for Kids: Why Children Are Missing From Clinical Research

Lyme treatment for kids is guided largely by studies that never included children. While clinical trials shape the guidelines doctors follow, the pivotal research on Lyme disease has focused almost exclusively on adults—leaving families and clinicians to extrapolate from data that may not apply to developing bodies and brains.

Children aren’t small adults. Their immune systems, neurological development, and physiologic responses differ in ways that matter for both infection and treatment. Yet the evidence base for Lyme treatment for kids remains remarkably thin.

Having served as an author on the International Lyme and Associated Diseases Society (ILADS) guidelines, I’ve long emphasized the need to adapt care for children precisely because the direct evidence is so limited.

Why Lyme Treatment for Kids Needs Its Own Evidence

Children with Lyme disease often present differently than adults. While adults may describe fatigue, joint pain, or brain fog, children may struggle with:

• Learning difficulties and declining school performance
• Behavioral changes mistaken for ADHD or mood disorders
• Sleep disturbance, irritability, or regression in daily function
• Neurological symptoms that increase fall or injury risk

These presentations create diagnostic challenges that adult-focused research doesn’t address. The question of how to approach Lyme treatment for kids when symptoms persist or recur remains largely unanswered by clinical trials.The assumption that all children recover with standard short-course treatment echoes the 30-day cure myth that affects adult care.

Who Gets Studied in Lyme Disease Research—and Who Doesn’t

Looking at NIH-funded Lyme studies highlights the scope of the problem:

Major Trials That Excluded Children

• Klempner trial (2001): Enrolled patients ages 18–65.

• Fallon trial (2008): Adults ages 18–70 with neurological Lyme.

• PLEASE trial (2016): Adults ages 18–67 in Europe.

• STOP-LD trial (2003): Adults only, ages 18–65.

Not one of these pivotal studies included children. The research that shapes how we think about persistent Lyme symptoms and treatment duration comes entirely from adult populations.

Families seeking guidance on Lyme treatment for kids are left to rely on extrapolation—an imperfect and potentially inadequate approach when children’s developing systems may respond differently to both infection and therapy.

The Guideline Gap

Treatment guidelines mirror these research limitations.

The Infectious Diseases Society of America (IDSA) guidelines do not support extended antibiotic therapy and provide limited discussion of complex or persistent pediatric presentations. Their recommendations are based primarily on the adult trials listed above.

In contrast, the ILADS guidelines—on which I served as an author in 2004 and 2014—emphasize individualized care, particularly when children remain symptomatic after standard therapy. This approach recognizes that Lyme treatment for kids may require flexibility that one-size-fits-all protocols don’t allow. This does not replace the need for stronger pediatric research—it reflects the reality that clinicians must make decisions despite limited trial data.

The disconnect between what guidelines recommend and what families experience reflects the underlying evidence gap.This disconnect reflects a larger gap in Lyme disease education that leaves clinicians without adequate training.

Why This Matters for Families

Children have decades of life ahead of them. When Lyme disease in children is not adequately addressed, the impact on education, development, and long-term health can be profound.

A relapse in a 10-year-old doesn’t just mean missing school—it can disrupt critical developmental windows and alter educational trajectory.

Families navigating Lyme treatment for kids need answers to questions the research hasn’t addressed:

• How long should treatment last when symptoms persist?
• Do co-infections like Babesia or Bartonella change the approach?
• What’s the safest way to balance infection treatment with growth and development?
• When do benefits of continued treatment outweigh risks?

Without pediatric-specific trials, these questions lack evidence-based answers.

Clinical Considerations

Until research expands to include children, clinicians and families must navigate uncertainty together.

Recognize the evidence gap. Children are underrepresented in Lyme research, which means adult-derived recommendations may not fully apply.

Individualize care. Lyme treatment for kids should balance infection control with developmental considerations and family circumstances.

Monitor broadly. Physical symptoms matter, but so do school performance, mood, cognitive function, and social development.

Include families in decisions. Parents observe their children across all contexts and often recognize patterns that brief clinical encounters miss.

The Clinical Reality

The research gap in Lyme treatment for kids creates real consequences for families. Without trials that include children, treatment decisions rely on clinical judgment rather than direct evidence.

This doesn’t mean treatment should be withheld—it means treatment requires careful individualization, ongoing monitoring, and honest acknowledgment of what we don’t yet know.

Children deserve research that addresses their specific needs. Until that research exists, families deserve clinicians willing to adapt care based on each child’s response rather than rigid adherence to adult-derived protocols.

Frequently Asked Questions

Why aren’t children included in Lyme disease clinical trials?

Pediatric trials face additional regulatory requirements, informed consent complexity, and recruitment challenges. These barriers have resulted in major Lyme studies enrolling only adults.

Can adult Lyme treatment guidelines be applied to children?

They’re often extrapolated to children, but this approach has limitations. Children’s immune systems and physiology differ from adults, potentially affecting both disease course and treatment response.

What should parents do if their child doesn’t improve after standard treatment?

Seek evaluation from a clinician experienced with pediatric tick-borne illness who can assess for persistent infection, co-infections, or other factors—and who is willing to individualize care.

Are longer treatment courses safe for children?

Safety depends on the specific medications, duration, and individual child. This is precisely why pediatric-specific research is needed—to answer these questions with direct evidence rather than extrapolation.

Links

1. 1. 1. Dr. Cameron’s blog – Only a minority of children with Lyme disease recall a tick bite
      2. Dr. Cameron’s blog – Study shows doctors can misdiagnose Lyme disease
      3. Dr. Cameron’s blog – https://danielcameronmd.com/lyme-disease-treatment-one-size-fit/
      4. CDC/IDSA  – The clinical assessment, treatment, and prevention of lyme disease, human granulocytic anaplasmosis, and babesiosis: clinical practice guidelines by the Infectious Diseases Society of America