Are We Dismissing Lyme Disease in Children?
Recommendations for managing Lyme disease in children may underestimate the seriousness of persistent symptoms—particularly when treatment options are limited to symptom management alone.
Neuropsychiatric manifestations of Lyme disease in children can be complex and, at times, dramatic.
“Case reports of neuropsychological manifestations of Lyme disease include Alice in Wonderland syndrome, Tourette’s syndrome, delirium, catatonia, psychosis, and stroke mimics,” write Koster and Garro in Child and Adolescent Psychiatric Clinics of North America.
While these presentations may be rare, they highlight the wide clinical spectrum of pediatric Lyme disease.
Strict Testing Criteria May Miss Cases
The authors recommend relying solely on two-tier serologic testing to diagnose Lyme disease.
They advise against alternative testing approaches, including Western blot without a positive ELISA.
However, strict adherence to testing criteria may overlook cases—particularly early or neurologic Lyme disease, where false negatives can occur.
Symptom Management Without Addressing Infection
For children with persistent symptoms, the authors recommend labeling the condition as post-treatment Lyme disease syndrome and focusing on symptom-directed care.
This may include medications for pain, sleep disturbance, and mood symptoms, along with behavioral therapies such as cognitive behavioral therapy and structured activity.
This approach assumes the infection has been eradicated—an assumption that cannot always be confirmed.
Limitations of Existing Evidence
The recommendations rely in part on NIH-sponsored trials, yet these studies have important limitations.
- Children were not included
- Many participants had longstanding illness
- Some had already failed prior treatment
In addition, at least one trial demonstrated improvement in fatigue symptoms.
There are currently no well-designed clinical trials evaluating these management strategies specifically in children.
Clinical Perspective
Persistent symptoms in children with Lyme disease remain poorly understood.
The possibility of ongoing infection has not been definitively excluded, as there are no validated tests to confirm eradication.
Limiting treatment discussions to symptom management alone may not reflect the full range of clinical uncertainty.
Clinical Takeaway
Children with persistent Lyme disease symptoms require careful evaluation, open clinical discussion, and consideration of all treatment options—not dismissal based on limited evidence.
Dr. Daniel Cameron, MD, MPH
Lyme disease clinician with over 30 years of experience and past president of ILADS.
Symptoms • Testing • Coinfections • Recovery • Pediatric • Prevention
When I saw the recommendations of the working group, I was afraid this exact thing was going to happen.
They intend to just put us all j to mental hospital and forget us.