Login
For Lynn Haber, a routine summer doctor’s visit in 2007 marked a turning point in her son’s life.
Gary, then 11, had already been diagnosed with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) following a strep throat infection.
The chronic neuroinflammation caused by the illness known as “brain on fire” includes symptoms like obsessive-compulsive disorder (OCD) and tics.
Haber said her son’s ailments only worsened after receiving two vaccines.
“This condition was manageable until the vaccines, and within days after the vaccines it became debilitating,” she wrote.
Haber alleges Gary developed autoimmune encephalitis, a condition that occurs when the body’s immune system mistakenly attacks healthy brain cells, causing severe brain swelling. He was so “severely impaired” that he had to reside in a group home, according to Haber.
“Years later we are still grieving the loss of the boy he was before a vaccine injury worsened his PANDAS condition and stole his normal life,” Haber said.
Gary’s story is one of many examples of parents who are seeking greater recognition of PANDAS and health complications related to the condition. It is also why they are advocating for expanded insurance coverage.
How prevalent is PANS? Experts disagree
Michigan recently introduced legislation that would provide access to covered treatments for children suffering from Pediatric Acute-onset Neuropsychiatric Syndrome (PANS).
PANDAS falls under the broader umbrella of PANS. PANS includes not only PANDAS, but other diagnoses such as autoimmune encephalitis, Lyme disease and illnesses due to toxic exposure.
Twenty states have mandated insurance coverage for both PANS/PANDAS, according to the Alliance to Solve PANS & Immune-Related Encephalopathies (ASPIRE).
Paul Ryan, president of the PACE Foundation, wrote in an emailed statement that “children with PANS/PANDAS deserve access to medically necessary treatment. Delays or denials of care can permanently impact a child’s health, education, and future,” he said.
Roughly 1 in 200 children in the U.S. is affected by PANS/PANDAS, according to the PANDAS Network, but health insurance does not cover it federally.
A retrospective study of more than 95,000 children at three academic medical centers produced a substantially lower estimate: about one new case per 11,765 children between the ages of 3-12 annually.
Researchers identified 13 confirmed cases among 357 potential cases reviewed from 2017-2019 and said the findings suggested PANS/PANDAS was rare.
The disparity illustrates how much remains unsettled about not only the syndrome but how prevalent it is.
Lyme disease and the search for answers
Maria Rickert Hong, author of a book about PANDAS, said Lyme disease is often a subset of PANS/PANDAS but said the syndrome itself can be difficult to trace.
“Even if all tests are negative, you could still have [PANDAS],” Hong said.
For Deborah Conner, the search for an explanation for her children’s symptoms led her to a surprising medical analysis.
After her daughter was diagnosed with PANDAS in 2009, she set up a support group in Texas for parents the following year. When her son developed symptoms in 2012, she grew even more desperate for answers. Then someone at one of the parent meetings suggested she get checked for Lyme disease.
“I felt that there was no way that Lyme was in our mix as neither child had a history of tick bite,” she said. “Then we had a speaker come to our support group and as he listed the symptoms for Lyme in adults. I had nearly all of them. We ultimately tested for Lyme Disease in 2014.”
She said she passed Lyme down to both children during pregnancy or nursing.
Lyme disease and other infections can be considered potential triggers or associated conditions in the broader PANS discussion, but they are not themselves diagnoses that fall under PANS.
PANS treatments ‘unfortunately’ not covered by insurance
Conner said her family self-funded care from an immunologist and PANDAS physician before they received their diagnoses. Because Texas is one of the states not covered for PANS/PANDAS, Conner spent her own money on countless doctor’s visits for her children.
“All of these diagnoses and their subsequent treatment need to be covered by insurance but unfortunately are not,” Conner said. “Isn’t that why we have health insurance? So that when we are ill, we can be provided with cost-effective treatment that won’t lead to debt?”
Terri Verdone, who also resides in Texas and whose youngest child was diagnosed with PANDAS in 2011, said a federal mandate should be in place to cover PANS/PANDAS.
“We need national standards,” she said. “We are in Texas — so far behind other states in treatment for our kids.”
One of the biggest battles for families dealing with PANS/PANDAS involves intravenous immunoglobulin (IVIG).
IVIG, which consists of antibodies derived from donated human plasma, is used to treat a range of immune-related conditions.
Some physicians treating severe PANS cases use it as an immunomodulatory treatment, but it is not approved by the U.S. Food and Drug Administration for children with PANS/PANDAS.
That has left families like Conner’s and insurers on opposite sides.
“We never went the IVIG route as that was cost prohibitive and not covered,” she said. “Healing is wonderful and would be even better if it was covered by health insurance and didn’t break the bank.”
This article was funded by critical thinkers like you.
The Defender is 100% reader-supported. No corporate sponsors. No paywalls. Our writers and editors rely on you to fund stories like this that mainstream media won’t write.
‘Much remains unknown’ about PANS — but parents say it’s ‘real’
The debate over PANS/PANDAS is not simply between families and insurers. It also reflects an evolving scientific field.
In 2025, the American Academy of Pediatrics (AAP) said PANS is “likely a valid diagnosis” but emphasized that its causes, diagnostic markers and optimal treatments are unclear.
“Much remains unknown about the condition,” the report states.
The AAP notes that the abrupt onset can occur following an infection. Symptoms can consist of increased anxiety, food restriction, emotional outbursts, and other neurological or behavioral changes.
The AAP’s 2025 clinical report recommends a cautious, evidence-based approach and multidisciplinary care.
The PANS Research Consortium has advocated a three-pronged treatment approach addressing psychiatric and behavioral symptoms, possible immune dysfunction and infections.
Advocacy groups who support mandated health coverage for children diagnosed with PANS/PANDAS and oppose the AAP’s report argue that not acting now could lead “children into needless suffering and irreversible harm.”
For families, the lack of scientific clarity and federal statutes collides with a problem that requires immediate attention: Their child is suffering now. Legislation can mean the difference between years of disability or a chance at recovery.
That’s why advocates in Michigan and elsewhere are pushing for laws requiring insurers to cover PANS/PANDAS treatment.
“Many people say PANDAS and PANS are controversial disorders,” Haber wrote. “But those of us who have lived it know too well that this illness is real.”
Related articles in The Defender
- Our Daughter Turns 25 This Year. She Deserves a Better Healthcare System
- America’s Fifty-Fold Increase in Obsessive-Compulsive Disorder
- Lyme Disease Vaccine: Pfizer Launches Phase 3 Trial Targeting Kids, Adults
- Pfizer Tests Lyme Disease Vaccine on Kids, But Experts Question Need
- Campaign to Restore Child Health: PANDAS, Autism and Vaccine Injury
