A mother brought her 10-year-old son to my office after eighteen months of declining health. He’d gone from an active, curious kid to one who couldn’t finish a school day. He struggled with headaches, fatigue, and what his teachers called “attention problems.” Three specialists had found nothing. His pediatrician suggested anxiety.
When I reviewed his history, the pattern was clear: a camping trip two summers ago, flu-like symptoms that resolved, then a slow unraveling. His Lyme test had been negative—so Lyme was never reconsidered. But clinical evaluation told a different story. He had Lyme disease and Babesia. With targeted treatment and a whole-child approach, he returned to school full-time within six months.
Managing Lyme in children is often misunderstood. Some recover quickly. Others don’t. And for those who remain ill months after initial treatment, the stakes are high.
Who This Page Is For
This resource is for parents whose children haven’t recovered after Lyme treatment, families searching for answers after seeing multiple specialists, and clinicians seeking a comprehensive approach to pediatric tick-borne illness. If your child has been dismissed or told “nothing is wrong” while still suffering, this page is for you.
Why Managing Lyme in Children Requires More Than Antibiotics
Over the years, I’ve seen how early intervention can change the trajectory of illness in children. Managing Lyme in children isn’t just about eradicating infection—it’s about protecting cognitive development, emotional regulation, school performance, and quality of life.
By the time many families reach my office, their child has seen multiple specialists—often without a unifying diagnosis or a clear plan. I connect the dots, assess for persistent or co-existing tick-borne infections, and help prevent long-term complications.
Here are the 12 interventions I use when supporting children with Lyme disease.
1. Restore Gut Health and Nutrition
Many children with Lyme disease experience nausea, appetite loss, constipation, or abdominal discomfort—especially during antibiotic treatment.
I review gastrointestinal symptoms in detail and recommend probiotics and, when needed, nystatin for yeast overgrowth. For GI discomfort, I may use H2 blockers like famotidine. Supporting hydration and nutrition is essential to aid recovery, particularly for children who have lost weight or struggle to eat.
2. Support Gentle, Consistent Movement
Fatigue and dizziness can lead to inactivity and deconditioning, both physically and emotionally.
I encourage low-impact movement based on each child’s tolerance and help families implement activity pacing strategies. Monitoring for post-exertional flares is critical—pushing too hard can set recovery back. The goal isn’t exercise for its own sake. It’s a return to function.
3. Protect Sleep and Daily Rhythms
Sleep disruption—including insomnia, night sweats, and early waking—can undermine recovery in children with Lyme disease.
I ask about sleep patterns and fatigue at every visit and screen for co-infections that may disturb sleep, such as Babesia. Recommendations often include changes to bedtime routines and screen use. When needed, I use non-sedating strategies or medications to restore sleep quality.
4. Manage Neuroinflammation and Cognitive Strain
Cognitive symptoms like memory lapses, attention issues, and word-finding problems are common—and deeply distressing for families.
I connect cognitive symptoms to infection history and evaluate for co-infections. Ruling out other medical contributors such as thyroid dysfunction or anemia is part of a thorough workup. When needed, I coordinate with the primary care doctor and specialists. Brain fog in children is real—and treatable.
5. Nurture Emotional Health and Stress Resilience
Chronic illness affects emotional well-being, especially when children feel dismissed or misunderstood.
I create space for children to describe their experience in their own words and help parents understand how neuroimmune effects can influence mood. Supporting parents in validating their child’s emotional experience matters. Emotional symptoms are real, connected to the illness, and treatable.
6. Create a Supportive Educational Environment
Children with Lyme disease may fall behind in school or struggle with focus, stamina, or sensory sensitivity.
I document functional limitations for 504 plans or IEP accommodations and recommend modifications like reduced workload, extended time, and rest breaks. Helping schools understand symptoms through a medical lens makes a significant difference. Academic recovery should be supported, not pressured.
7. Encourage Family and Community Support
Managing Lyme in children affects the entire household. Parents often feel overwhelmed, isolated, and uncertain.
I involve caregivers in care planning and decision-making from the start and offer written guidance on treatment expectations. Normalizing the emotional toll of chronic illness—and offering mental health support options—helps families cope. I remind families that relapses are common but manageable with the right plan.
8. Evaluate and Manage Autonomic Dysfunction
Symptoms like dizziness, lightheadedness, and heart palpitations may reflect autonomic dysfunction, such as POTS.
I take a detailed autonomic symptom history and assess sweating, temperature regulation, and GI motility for broader signs of dysautonomia. Treatment often includes hydration protocols, electrolyte support, and compression garments. When appropriate, I prescribe medications to improve function.
9. Manage Medication Tolerance and Side Effects
Antibiotic and adjunctive therapies can cause side effects that disrupt treatment.
I monitor for GI issues, rashes, fatigue, and behavior changes throughout treatment and adjust medications or doses to maximize tolerability. Using antiemetics, H2 blockers, and treatment pauses when needed is part of good care. I reassure families that managing side effects doesn’t mean treatment is failing.
10. Clarify the Diagnosis in Complex Cases
Some children arrive without a clear diagnosis—or after being told “nothing is wrong.”
I review the full tick exposure and symptom timeline, assess prior test results and treatment history, and rule out mimicking conditions including autoimmune, neurologic, and endocrine disorders. A thorough medical evaluation tailored to chronic or unresolved conditions often reveals what others have missed.
11. Reduce Reinfection Risk and Tick Exposure
Preventing another tick-borne illness is just as important as treating the first.
I teach families tick bite prevention techniques based on CDC recommendations and advise on seasonal precautions and high-risk activities. Children often don’t recall tick bites, which makes prevention education essential. I discuss the limitations of single-dose doxycycline prophylaxis and emphasize the importance of early detection and prompt treatment.
12. Plan for Long-Term Follow-Up and Transitions
Some children need care across school years or as they enter adolescence and adulthood.
I create a follow-up and monitoring plan tailored to each child and provide documentation for school, college, and future providers. Helping families prepare for care transitions as their child grows is part of comprehensive management. I remain available for flare-ups, second opinions, or re-treatment when needed.
Frequently Asked Questions
What does managing Lyme in children involve?
Managing Lyme in children goes beyond antibiotics. It means addressing gut health, sleep, cognition, emotional well-being, school accommodations, family support, autonomic symptoms, medication tolerance, and long-term follow-up—a true whole-child approach.
Can children fully recover from Lyme disease?
Yes. Many children recover fully with appropriate treatment. Others require longer or more comprehensive care. Recovery depends on how early treatment begins, whether co-infections are addressed, and how well the whole child is supported.
What if my child was treated but still has symptoms?
Persistent symptoms after treatment are common and deserve further evaluation—not dismissal. I assess for ongoing infection, co-infections, immune dysregulation, and other contributing factors.
How do I get my child’s school to accommodate their illness?
I provide documentation of functional limitations and specific recommendations for 504 plans or IEP accommodations. Schools often respond better when they understand symptoms through a medical framework.
Should I be worried about my child getting Lyme disease again?
Reinfection is possible, especially in endemic areas. Prevention education and early detection are the best protection. One infection doesn’t provide immunity.
The Bottom Line
Managing Lyme in children means more than eliminating the infection. It requires a whole-child approach—one that addresses not only the physical symptoms, but also the cognitive, emotional, academic, and family impact.
These 12 interventions I use are designed to protect long-term health, support families through uncertainty, and restore what matters most: function, confidence, and hope.
“Managing Lyme in children isn’t just about treating infection. It’s about protecting development, preserving potential, and restoring quality of life.”
My daughter was first infected with lyme at the age of two and a half ..we saw the bullseye, but not the tick. She wastreated with amoxicillin for the regular course. Her pediatrician was unwilling to hear my concerns about continued issues.In her health, over the next several years. Including a high micotoxin lab following exposure to a fire at my parents’ home. I had to fight for labs and then for treatment for the same. Everything was diagnosed as ADHD early life trauma, due to adoption, anxiety., mood dysreg. She was put on all kinds of very Heavy duty medication, incl Antipsychotics ..none of it helped her raging, her dysregulation her inability to settle,
Her somewhat restrictive dietary needs that had developed. In fact, it often made her more emotionally unstable.While on the meds. Fast forward to years of therapists, the department of mental health involvement, hospitalizations to no avail. She then had another bout of lyme a year ago at 14. The initial response since that infection, after antibiotic treatment, she has been extraordinarily tired. She dances and has extreme discomfort , often puffiness in her knees, Light sensitivity and complete and utter inability to manage daytime sleep to the point where having our second sleep study done next week. Many days she just can’t wake up and get out of bed.It to her feels like she’s walking through quicksand. Her PCP says she doesn’t seem to clear two bands of lyme. She also has tested positive for epstein barr virus., both which was much younger, and retested for lyme, as well as
This past fall. Her pediatrician says that’s nothing to be concerned about.Because once you’ve had it, it will always show up as positive. She has a 138. IQ and her grades in school. This year have tanked her ability to focus even with her executive functioning challenges is so Extremely off. We’ve had to step her down in classes. She is constantly exhausted and believes she’s trying her best, but is foggy and her short term memory is completely off.So her grades are reflecting all of that as a result. It’s so demoralizing for her. My questions are many, but could it be that carrying these two bands of lyme infection still on her most recent testing Proves anything? I even brought her to manhattan during the height of the pandemic to have a spect scan of her brain done at the Amen.Clinic , only to give us very broad results that she has neuroinflammation, and it could be caused by a multitude of things. She genetically has mthfr c677t homozygous, and no doctor will take that seriously either. We need some answers.
The school believes perhaps its depression or its something else.But it’s a marked difference from how she presented last year.I see it and I don’t know how to help her.
Dr. Pasternak at mass general. Was planning on the cunningham panel, but he is out on leave.I can’t find a pediatric lyme doctor who will take me seriously, please.I need some insight as to what I should be asking for at this point. She is asleep two and three times during the daytime class.She is getting about seven hours of sleep.Every night, although not great, certainly more than ample for her to be able to stay awake. But she can’t, she falls asleep at the drop of a hat and it takes everything for her to be awakened. Sometimes sleeping 2 and 3 times in a class. Every teacher has commented on how it has directly impacted her ability to learn material and to process it to be able to
Comprehend and move forward, reflective of her abilities. Can you give me any of the suggestions of resources? Other testing, we should be having, people we should be talking to. She is extremely resistant to taking any sort of holistic therapies, with sensitivity to everything she puts in her mouth. I’m afraid she’s in such a downward spiral mentally, mostly because she feels so defeated and that no one is really hearing us. Thank you for your time.
I’m sorry — this is incredibly hard. Lyme testing doesn’t determine whether infection is “cleared,” and persistent cognitive, sleep, and fatigue symptoms after Lyme shouldn’t be dismissed as psychiatric by default. A marked change like this deserves careful clinical evaluation. You’re right to keep advocating.