Lyme, PANS and PANDAS in Children - What the Evidence Says

Lyme, PANS and PANDAS in Children: What the Evidence Actually Shows

Written by Amy Patton, DNP, APRN, CPNP-PC - pediatric nurse practitioner and founder of Happy Kid Functional Medicine, Omaha.

PANS is a clinical diagnosis. It is used when a child's obsessive-compulsive behavior or food refusal starts abruptly. Other neuropsychiatric symptoms arrive just as fast. PANDAS is the version of that picture tied to strep. Neither one has a lab test that confirms it.

If your child changed almost overnight, you know the shape of this. The rituals. The rage that comes from nowhere. The foods that were fine last month and are impossible now. The bedwetting that came back at 9. School falling apart in weeks. And then somebody in a Facebook group said one word: Lyme.

You want to know whether that's true. I'll tell you, including the parts that don't help my case.

What do parents ask me most about this?

Short answers first. The full reasoning is below.

What are PANS and PANDAS?

PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome. A child suddenly develops obsessive-compulsive behavior or severely restricted food intake. Then come equally sudden symptoms from at least 2 of 7 other categories. And nothing else explains the picture better. That's the diagnosis.

Can Lyme disease cause PANS?

Nobody has shown that Lyme disease causes PANS. The PANS Research Consortium defined this condition. Those same clinicians wrote it into their own 2017 consensus paper: "to date, we are unaware of an unequivocal case of PANS associated with Lyme disease." That sentence is theirs, not mine.

What about Bartonella?

Bartonella is a bacterium. Cat fleas most often carry it. Children usually pick it up through a cat scratch. Some children have sudden neuropsychiatric symptoms. For them, the published pediatric evidence is exactly one case report. One child. That's the entire pediatric evidence base.

So why do I still ask about ticks?

Because a full history is how I find out what changed. Abrupt change in a previously well child has a cause. I'm not claiming Lyme disease causes PANS. I'm asking where your child has been. What might have bitten them. And what happened in the weeks before everything shifted.

What does the evidence actually support in PANS?

The PANS Research Consortium recommends an initial anti-streptococcal course. That goes for every newly diagnosed case of PANS. They also call for close monitoring for other infections along the way. Their Part III consensus paper puts it directly.

Where does that leave a parent?

It leaves you holding two true things at once. The sudden change in your child is real. Your child is not making it up. And in most children, the evidence does not support Lyme disease. It is not the reason for that change. Both of those are true at the same time. You don't have to choose one.

What are PANS and PANDAS?

PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome. A child suddenly develops obsessive-compulsive behavior or severely restricted food intake. Then come equally sudden symptoms from at least 2 of 7 other categories. And nothing else explains the picture better. That's the diagnosis.

Read those 7 categories slowly.

Symptom category	What it often looks like at home
Anxiety	Separation fear that wasn't there a month ago
Emotional lability or depression	Crying spells that come out of nowhere
Irritability, aggression or severely oppositional behavior	Zero to screaming in seconds
Behavioral or developmental regression	Baby talk, needing help with things they had mastered
Deterioration in school performance	Handwriting falls apart, grades drop in weeks
Sensory or motor abnormalities	Tags and seams suddenly unbearable, new clumsiness
Somatic symptoms	Sleep problems, bedwetting, urinating often

PANDAS is the strep-specific subset. It was described in 1998 in a series of 50 children. Their OCD or tics began before puberty. The symptoms came and went in waves. And they lined up with group A strep. PANS is the broader label. PANS takes no position on the trigger. No infection is required.

Here's the part that matters most. PANS and PANDAS are clinical diagnoses with no confirming lab test. The National Institute of Mental Health says it plainly. No lab tests can confirm PANS or PANDAS. The American Academy of Pediatrics said the same thing. It came in the AAP's 2025 clinical report. The AAP wrote that the condition "lacks disease-specific biomarkers, strong evidence for pathogenic causes, and consensus on treatment of clinical symptoms."

That's not a loophole. It's the honest starting point. Someone may tell you a blood test proved your child has PANS. That is a claim the field itself does not make. There's a fuller version in my PANS and PANDAS guide.

Book My Free 15-Minute Call - get clarity and learn more.

Free. No obligation. Not a sales call. Or call or text me directly at 402-988-1873.

Can Lyme disease cause PANS?

Nobody has shown that Lyme disease causes PANS. The PANS Research Consortium defined this condition. Those same clinicians wrote it into their own 2017 consensus paper: "to date, we are unaware of an unequivocal case of PANS associated with Lyme disease." That sentence is theirs, not mine.

The same paper adds a caution for families outside endemic regions. Their words: "Children outside these regions are unlikely to have a Lyme infection, even if they have a positive laboratory test. Positive Borrelia burgdorferi serology is more likely to be falsely positive in these areas."

The largest study ever done on this question is null. Tetens and colleagues built a nationwide Danish matched cohort. It ran in the Journal of Child Psychology and Psychiatry in 2025. The cohort was 1,132 children under 16 with lab-confirmed neuroborreliosis. That means a positive intrathecal antibody index. They were matched against 11,320 comparators across 168,858 person-years. Here is their conclusion, in their words: "Our results do not support that neuroborreliosis in children manifests as psychiatric neurodevelopmental disorders or causes long-term neurodevelopmental sequelae."

That study isn't alone.

Study	Who counted as a Lyme case	What it found
Tetens 2025, J Child Psychol Psychiatry	1,132 children under 16, positive intrathecal antibody index	Psychiatric contact HR 1.0, ADHD HR 0.9, learning or intellectual developmental disorder HR 0.8
Tetens 2021, JAMA Psychiatry	2,897 people, confirmed neuroborreliosis	No higher risk of psychiatric diagnosis or hospital contact
Adams 1994, Pediatrics	41 children, strictly defined Lyme, blinded	No differences on any neuropsychological measure or school achievement score
Bloom 1998, Pediatr Infect Dis J	5 children, intrathecal antibody confirmed	Behavioral change, forgetfulness, declining school performance
Fallon 2021, Am J Psychiatry	12,156 people, any hospital-registered Lyme diagnosis	Any mental disorder IRR 1.28, affective disorders IRR 1.42

Now the other side, as fairly as I know how. Bloom's 1998 series is small but rigorous. All 5 children had intrathecal antibody production. All 5 developed behavioral change and school decline. Fallon's 2021 Danish register study covered 6.9 million people. It found real rises in mental and affective disorders. Those are not junk studies.

So why do Tetens and Fallon disagree? Mostly because they counted different people. Tetens defined cases by objective evidence of infection in the central nervous system. Fallon defined cases by any hospital-registered Lyme diagnosis. One group is children with proven neuroborreliosis. The other group is much larger and looser. That's most of the gap.

What about Bartonella?

Bartonella is a bacterium. Cat fleas most often carry it. Children usually pick it up through a cat scratch. Some children have sudden neuropsychiatric symptoms. For them, the published pediatric evidence is exactly one case report. One child. That's the entire pediatric evidence base. It deserves to be described that way.

That case was published in 2019. It was a 14-year-old boy with sudden-onset psychosis. He stayed psychotic for 18 months across four hospitalizations. Bartonella henselae DNA was found in his blood. His symptoms improved on combination antimicrobials. He returned to his prior activities. It's a striking story. It's still one patient.

The largest study, Delaney 2024, tested 116 people. Among adults with psychosis, 43.2% were positive for Bartonella DNA. Among adult controls, 14.3% were. That difference was significant at p = 0.021. But three findings in that same paper matter here. They matter a great deal for a pediatric practice:

• None of the 7 children and adolescents with psychosis were positive. Zero of seven.

• There was no difference at all in antibody testing between groups. The entire signal came from DNA testing.

• Bartonella DNA showed up in 17.2% of the controls. Those are people without psychosis.

That third point deserves a sentence of its own. This test finds the organism in people who are perfectly well. That's almost 1 in 6 of them. So a positive result in your child sounds big. It tells you much less than that.

No independent laboratory has replicated this finding. And the authors disclose a conflict in every paper. Dr. Breitschwerdt co-founded Galaxy Diagnostics. Dr. Maggi is its Chief Technology Officer. Galaxy sells the assay used in these studies. That disclosure comes from the researchers themselves.

What would change my mind is simple. An independent lab, with nothing to sell, reproduces the result in children. I write more on Bartonella in children.

So why do I still ask about ticks?

Because a full history is how I find out what changed. Abrupt change in a previously well child has a cause. I'm not claiming Lyme disease causes PANS. I'm asking where your child has been. What might have bitten them. And what happened in the weeks before everything shifted.

What actually moves me in a history is specific. A week of summer camp in the woods right before the change. A trip to Minnesota, Wisconsin, or the Northeast. A bite nobody remembers. A rash nobody photographed. The grandparents mentioned it once, and everyone forgot. A tick pulled off a scalp in June. Then a July that made no sense.

That's a different question from ‘did your child ever go outside

That's a different question from "did your child ever go outside?" I'm looking for a place and a season. I want a timeline that lines up. When they do, the history is doing real work. When they don't, no lab test rescues it.

Here's what I won't do. Say a Nebraska child has behavior change and no exposure story. I won't order Lyme testing. And I'll tell you exactly why. In a low-prevalence place, a positive result is more likely to be false than true. That means I can't act on it. A result I can't trust isn't neutral. It sends a family down a road. That road costs them months and thousands of dollars. It costs them something harder to replace than either. Their sense that someone finally knows what's going on. Then the road runs out, and the child is no better.

Does your child have a real exposure story? Then testing becomes a fair question. Not a shot in the dark. I walk through how those tests work in Lyme testing in children. That piece also covers where they fail. I cover local risk in Ticks in Nebraska and Iowa.

What does the evidence actually support in PANS?

The PANS Research Consortium recommends an initial anti-streptococcal course. That goes for every newly diagnosed case of PANS. They also call for close monitoring for other infections along the way. Their Part III consensus paper puts it directly. Intercurrent infections "should be diagnosed and treated promptly according to current standard guidelines," it says. Clinicians should "rule out co-existing infectious causes with a thorough history and physical examination."

And in the same paper, the counterweight: "In the absence of a suggestive clinical syndrome, unfocused broad-spectrum serologic diagnostic testing for various microbial pathogens is generally not useful."

Both sentences come from the same experts. A page that quotes the first and hides the second isn't being straight with you.

Now the treatment evidence, thinner than most families are told.

• The definitive IVIG trial was negative. Williams and colleagues ran a randomized, double-blind, placebo-controlled trial in 2016. It enrolled 35 children. It "failed to demonstrate superiority of IVIG over placebo."

• The systematic review is not encouraging. A 2021 GRADE-based review looked at the same question. It found "very low certainty of evidence of beneficial effects, and moderate certainty of evidence of adverse effects." Meaning: the benefit isn't established. The harm is. That's a hard combination to justify in a child.

• The Cunningham Panel is not a diagnostic test. The AAP's 2025 report says it isn't recommended. It cites specificity as low as 6% for PANS and 10% for PANDAS. Hesselmark and Bejerot ran the only independent evaluation in 2017. They found sensitivity of 15–60% and specificity of 28–92%. The same researchers ran a 2019 follow-up. They found a "positive" result in 86% of healthy controls. It's a laboratory-developed test running under CLIA. So the FDA has never reviewed its clinical validity.

None of that means your child's symptoms aren't real. It means the tools being sold to explain them are weaker than the sales pitch.

Where does that leave a parent?

It leaves you holding two true things at once. The sudden change in your child is real. Your child is not making it up. And in most children, the evidence does not support Lyme disease. It is not the reason for that change. Both of those are true at the same time. You don't have to choose one.

So here's what I do instead of guessing. I work the foundations I can actually reach. The picture gets clearer while I do. Sleep, eating, gut function, iron and nutrient status. The strep and sinus history. What's happening at school. Some of that overlaps with Pediatric gut testing. Some of it overlaps with Evidence-based natural remedies for ADHD. None of it requires a diagnosis to begin.

I don't guess on my own. I get objective findings in front of the right specialist. Some children have new tics, new regression, or new food refusal. They often need pediatric neurology, psychiatry, or infectious disease. They need to arrive there with documented findings. Not a printout from a lab nobody recognizes. A specialist who trusts your paperwork moves faster.

And I don't put a child on a long antibiotic course. Not on the strength of a borderline band on a Western blot. Some children present with developmental, behavioral or psychiatric disorders. The IDSA, AAN and ACR 2020 Lyme guidelines suggest against routinely testing them for Lyme disease. I'll be fair about that recommendation too. The guideline itself grades it weak, based on low-quality evidence. It's a reasonable default, not a settled fact. I'd rather you hear that from me. Systematic review work has also looked for the chronic tick-borne co-infection picture. That work covered children with long-running nonspecific illness. It found no convincing evidence. Worth knowing before anyone starts naming three organisms at once.

What this means for your child

Your child's sudden change deserves a careful, unhurried history. Not one test result and a long prescription. That's the whole message. The families who do best in my practice slow down for two weeks. They get the picture straight. Then they move.

In practice, that looks like this. Write down the date everything changed. Get as close as you can. Then look at the 8 weeks before that date. List what your child was sick with, exposed to, or traveling through. Photograph any rash the day you see it. Keep a one-line note each evening. Cover sleep, eating, rituals and school. Four weeks of that beats any panel I could order. It shows the shape of the thing over time, not one blurry snapshot. Bring it with you to every appointment.

Is a tick bite in your child's story? That's worth chasing, and I'll help you chase it. Start with what to do after a tick bite. Or read the Lyme disease and tick-borne illness hub for the whole set. If there's no exposure story, the honest work is somewhere else. I'd rather spend your money finding it. Not confirming something that isn't there.

I know this article didn't hand you the answer you were hoping for. The Facebook version is simpler. Simpler feels like relief when you're this tired. But a wrong answer costs you the one thing you can't get back. Time, while your child is still struggling.

You're not being difficult by asking. You're being your child's parent. You've been the one paying attention this whole time. Want to talk it through? I'll tell you what the evidence says, even when it's inconvenient. Contact me and we'll start there.

Book My Free 15-Minute Call - get clarity and learn more.

Free. No obligation. Not a sales call. Or call or text me directly at 402-988-1873.

References

1. Swedo SE, Leonard HL, Garvey M, et al. Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections: clinical description of the first 50 cases. Am J Psychiatry. 1998;155(2):264–271. The paper that named PANDAS, describing 50 children with strep-associated OCD and tics.

2. Chang K, Frankovich J, Cooperstock M, et al. Clinical evaluation of youth with pediatric acute-onset neuropsychiatric syndrome (PANS): recommendations from the 2013 PANS Consensus Conference. J Child Adolesc Psychopharmacol. 2015;25(1):3–13. Restates the PANS criteria: abrupt OCD or restricted eating, plus 2 of 7 symptom categories.

3. National Institute of Mental Health. PANS and PANDAS: Questions and Answers. NIMH states plainly that no lab tests can confirm PANS or PANDAS.

4. American Academy of Pediatrics. Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS): Clinical Report. Pediatrics. 2025;155(3):e2024070334. The AAP's current position: PANS lacks disease-specific biomarkers, and the Cunningham Panel is not recommended.

5. Cooperstock MS, Swedo SE, Pasternack MS, Murphy TK. Clinical Management of Pediatric Acute-Onset Neuropsychiatric Syndrome: Part III – Treatment and Prevention of Infections. J Child Adolesc Psychopharmacol. 2017;27(7):594–606. Source of both the "no unequivocal case" statement about Lyme and the caution against unfocused serologic testing.

6. Tetens MM, Graham EE, Andersen NS, et al. No associations between neuroborreliosis in children and psychiatric neurodevelopmental disorders: a nationwide, population-based, matched cohort study. J Child Psychol Psychiatry. 2025;66(5):716–724. 1,132 children with confirmed neuroborreliosis versus 11,320 matched comparators; no excess psychiatric or neurodevelopmental risk.

7. Tetens MM, Haahr R, Dessau RB, et al. Assessment of the Risk of Psychiatric Disorders, Use of Psychiatric Hospitals, and Receipt of Psychiatric Medication Among Patients With Lyme Neuroborreliosis in Denmark. JAMA Psychiatry. 2021;78(2):177–186. 2,897 confirmed cases; risk of psychiatric diagnosis and psychiatric hospital contact was not higher.

8. Adams WV, Rose CD, Eppes SC, Klein JD. Cognitive effects of Lyme disease in children. Pediatrics. 1994;94(2 Pt 1):185–189. Prospective, blinded, controlled study of 41 children; no differences on neuropsychological testing or school achievement.

9. Bloom BJ, Wyckoff PM, Meissner HC, Steere AC. Neurocognitive abnormalities in children after classic manifestations of Lyme disease. Pediatr Infect Dis J. 1998;17(3):189–196. Five children with intrathecal antibody-confirmed neuroborreliosis who developed behavioral change and school decline.

10. Fallon BA, Madsen T, Erlangsen A, Benros ME. Lyme Borreliosis and Associations With Mental Disorders and Suicidal Behavior: A Nationwide Danish Cohort Study. Am J Psychiatry. 2021;178(10):921–931. Registry cohort of 6.9 million with 12,156 Lyme cases; any mental disorder IRR 1.28, affective disorders IRR 1.42.

11. Breitschwerdt EB, Greenberg R, Maggi RG, et al. Bartonella henselae Bloodstream Infection in a Boy With Pediatric Acute-Onset Neuropsychiatric Syndrome. J Cent Nerv Syst Dis. 2019;11:1179573519832014. The single published pediatric case report; the authors disclose their Galaxy Diagnostics affiliation.

12. Delaney S, Robveille C, Maggi RG, et al. Bartonella species bacteremia in association with adult psychosis. Front Psychiatry. 2024;15:1388442. n=116; 43.2% versus 14.3% in adults, p=0.021, but none of the 7 children with psychosis was positive.

13. Williams KA, Swedo SE, Farmer CA, et al. Randomized, Controlled Trial of Intravenous Immunoglobulin for PANDAS. J Am Acad Child Adolesc Psychiatry. 2016;55(10):860–867.e2. Double-blind placebo-controlled trial in 35 children that failed to demonstrate superiority of IVIG over placebo.

14. Johnson M, Ehlers S, Fernell E, et al. Anti-inflammatory, antibacterial and immunomodulatory treatment in children with symptoms corresponding to the research condition PANS: A systematic review. PLoS One. 2021;16(7):e0253844. GRADE review: very low certainty of benefit, moderate certainty of adverse effects.

15. Hesselmark E, Bejerot S. Biomarkers for diagnosis of Pediatric Acute Neuropsychiatric Syndrome (PANS) – Sensitivity and specificity of the Cunningham Panel. J Neuroimmunol. 2017;312:31–37. The only independent evaluation: sensitivity 15–60%, specificity 28–92%.

16. Bejerot S, Hesselmark E. The Cunningham Panel is an unreliable biological measure. Transl Psychiatry. 2019;9(1):49. Found a "positive" panel result in 86% of healthy controls.

17. Lantos PM, Rumbaugh J, Bockenstedt LK, et al. Clinical Practice Guidelines by IDSA, AAN, and ACR: 2020 Guidelines for the Prevention, Diagnosis and Treatment of Lyme Disease. Clin Infect Dis. 2021;72(1):e1–e48. Suggests against routinely testing children with developmental, behavioral or psychiatric disorders; graded weak, low-quality evidence.

18. Lantos PM, Wormser GP. Chronic coinfections in patients diagnosed with chronic Lyme disease: a systematic review. Am J Med. 2014;127(11):1105–1110. Found no convincing evidence for chronic atypical tick-borne co-infections in patients with chronic nonspecific illness.