Dozens of Michigan children with a rare psychiatric disorder linked to previous infections would gain access to treatments known to curb their symptoms under legislation introduced in the Michigan House in late July. The bill pairs with a Senate measure introduced last year.
PANS, or Pediatric Acute-onset Neuropsychiatric Syndrome, is marked by the sudden appearance of mental health symptoms such as obsessive-compulsive behaviors or tics within days of an infection like a cold, the flu, COVID or Lyme disease.
It was first identified by National Institute of Mental Health researchers in 1998, who noticed sudden brain disorders happening in kids with strep throat.
They called the condition PANDAS, for Pediatric Autoimmune Neuropsychiatric Disorders Associated with streptococcal infections, and it’s now considered a subset of PANS.
Dr. Susan Youngs is pediatrician based in Dearborn and is a children’s rehabilitation specialist. She said health insurers often want to conflate PANS/PANDAS with other children's mental health conditions. But failure to recognize it as a distinct syndrome can lead to inadequate treatment, and lifetime consequences for kids.
“Yes, there are children with generalized anxiety disorders, and yes, there are children with obsessive compulsive disorder, but PANDAS and PANS presents shockingly different than those people,” Young said.
“PANDAS and PANS steels a child. It’s like, you go to bed one kid, and you wake up a completely different kid.”
IVIG therapy
Though scientists don’t yet have all the answers, it’s generally accepted that PANS/PANDAS occurs when something triggers the body’s immune system to attack parts of the brain that control a child’s behavior and emotions.
As medical director of the Corewell Health Center for Exceptional Families, Youngs said she has treated more than 300 children with PANS/PANDAS, including about 50 currently.
In a majority of cases, a course of antibiotics, anti-inflammatory medication and steroids are enough to diminish the symptoms, according to Youngs. But kids with the most severe cases can require intravenous immunoglobulin treatments, or IVIG.
IVIG is proven to result in dramatic, permanent recovery for some children—but it’s very expensive.
In many cases, parents say they have to fight to get health insurance coverage. Sometimes insurers pay for a few treatments, but then discontinue coverage.
Parents watch their kids improve—only to backslide into torturous symptoms like seizures, hallucinations or even loss of control over bodily functions.
“We need legislation for the 10% of kids who need IVIG—they need it and they need it yesterday,” Youngs said. “We can’t be dinking around waiting for approvals while kids’ brains are on fire.”
In addition to insurance issues, treatment often is delayed because pediatricians don’t know about PANS/PANDAS or don’t treat the possibility seriously, such as by testing for strep or another infection when a child presents with psychiatric symptoms.
Youngs said making insurance coverage a state law would push health care providers to get educated about PANS and keep up with the literature—resulting in more kids getting correctly diagnosed and treated.
The American Academy of Pediatrics recognizes PANS/PANDAS as a “likely valid” diagnosis but hasn’t weighed in on specific treatments like IVIG. It recommends caution when diagnosing or treating the condition, noting the need for more research.
Asked about parents' comments, Blue Cross Blue Shield of Michigan, the state’s largest commercial health insurer, issued a statement saying:
“Like all health insurers in Michigan, Blue Cross Blue Shield of Michigan does not cover IVIG treatment for PANS/PANDAS broadly due to the lack of clinical data and no approval of this treatment for this syndrome by the FDA.”
The statement noted that customers can appeal coverage decisions. If approved, IVIG is given on a trial basis for three to six months, and if improvements are found, can be continued for another three to six month period.
“IVIG treatment is not without potential risk to the patient in that the use of this treatment, especially in pediatric patients, comes with risk of complications,” the statement continued.
“At Blue Cross, our goal is to provide our members with access to the most appropriate, safe and proven effective treatments and healthcare services available. We take these risks and complications into account when developing medical and pharmacy policies.”
Harmful delays
Kim Talia of Troy, MI, blames delays in recognizing and treating PANS/PANDAS for permanent disabilities she said her son suffered after coming down with symptoms in 2022.
At the time, now 15-year-old Roman was a thriving middle schooler involved with friends and sports. He scored in the top two percent nationally on academic tests, his mom says.
After several bouts of illness in 2022, Roman started displaying psychiatric symptoms such as staring spells, food aversions, involuntary movements and obsessive compulsive behaviors.
Then here started having seizures. He developed severe epilepsy, suffering as many as 65 seizures a day. At one point he spent time in an ICU in an induced coma, just to give his brain a chance to cool off. During 2022 and the following year, he spent roughly six months in various hospitals, and had several brain surgeries.
After consulting multiple doctors, Roman was diagnosed with Lyme Disease and PANS in 2023, by an NIH doctor who prescribed treatment with IVIG. But treatment was delayed while the family sought recognition of that diagnosis by a traditional hospital system to satisfy their health insurer—a process that required extensive documentation and appeals of multiple denials.
When Roman finally began consistent IVIG in March 2024, he experienced major improvements in his EEG tests, a dramatic decrease in seizures, and improvements in his behavior and school attendance. Nonetheless, the insurance company denied coverage 11 months later, requiring another "herculean" effort to get it reinstated.
The immune cell infusions have reduced Roman’s seizures by 90%, according to Talia. But delays in treatment have taken a heavy toll on Roman’s brain.
Once in the top two percent of students nationally on academic tests, Roman now requires 24/7 care. He attends school part-time, helped by a one-on-one aid. And two county health aids provide him with twice-weekly rehabilitation services.
“I did not know what PANS and PANDAS was in all my years in education and that is why I’m so adamant about bringing recognition to this—for educators, for parents, for physicians,” said Talia, who quit her job as a literacy specialist to care for Roman full-time.
“Because early intervention with these kids in the early months can stop what eventually happened to my son, and it has been a tremendously tragic journey.”
Dr. Youngs said she is part of a cohort of hundreds of doctors and researchers from across the country who meet weekly to talk about PANS/PANDAS cases and treatments.
She noted that states that have passed legislation mandating diagnosis and treatment, multi-disciplinary centers have been established that allow for collaboration among physicians, neurologists, psychiatrists, behavioralists and infectious disease doctors—all of whom may play a role in diagnosis and treatment.
“In the states that have IVIG and insurance coverage for PANDAS and PANS, kids are getting IVIG and they’re universally getting better,” she said.
Proven treatment
Cindy Groene of South Lyon, MI, became an advocate for the legislation after her son, now 22, was successfully treated after coming down with psychiatric symptoms seemingly overnight when he was in kindergarten in 2009.
After running a fever one night, he woke up crying, anxious and confused. The symptoms worsened even after the infection was gone — obsessive compulsive behaviors, extreme separation anxiety, fear of going to school, tantrums and outbursts.
The parents consulted their pediatrician, a neurologist and a psychiatrist who were not able to explain what was happening, Groene eventually read about PANS/PANDAS and found an out-of-state doctor who was able to diagnose her son.
When the doctor recommended IVIG it was uncertain whether the family’s health insurer would cover the expensive treatment.
Feeling there was no time to waste, Groene said she had to pay up front for two IVIG treatments her son received.
The family’s health insurer eventually covered the cost, and the two IVIG treatments set Groene’s son on a path to recovery. By 10th grade, he no longer had psychiatric symptoms, and he recently graduated from college. But Groene notes that the outcome could have been very different.
She now runs the Michigan PANS/PANDAS Facebook page, which has more than 1,000 members, enabling her to stay on top of what’s happening with families coping with PANDAS and PANS.
“I know of families where now they have an adult child who is disabled to not live alone because they did not get the proper treatment for this disorder,” Groene said. “And it is totally treatable.”
“It causes brain inflammation, and if you can stop that cycle and stop it early there is every chance of recovery.”
Interview Transcript
Melorie Begay: A bill has been introduced in the Michigan House of Representatives that advocates say would bring relief to dozens of kids who have a rare brain disorder linked to illnesses like colds, the flu or strep throat.
WKAR reporter Karen Bouffard has been looking into the legislation and joins me now. Thanks for being here, Karen.
Karen Bouffard: Thanks, Melorie.
Begay: So, Karen, what is this condition, and what would this legislation do?
Bouffard: The condition is called PANS for Pediatric Acute-onset Neuropsychiatric Syndrome, and it causes sometimes severe psychiatric symptoms that come on within days of a child having a cold, a flu or some other illness.
A subgroup is called PANDAS for Pediatric Autoimmune Neuropsychiatric Disorders associated with streptococcal infections. And like its name suggests, it's linked specifically to to strep throat infections. Together, the conditions are known as PANS/PANDAS, and the legislation would require health insurance companies to pay for treatments for PANS or PANDAS that can sometimes run into the tens of thousans of dollars.
Begay: Do we know how prevalent this condition is?
Bouffard: The estimates vary wildly. Most researchers estimate that one to two children per 1000 meet the criteria for a diagnosis of PANS or PANDAS. But because it's triggered by infections, and you know, including strep, but also other things, some researchers estimate that it could be as many as one in 200 children. So, this is really still up in the air.
Begay: And you mentioned some of the symptoms. I'm curious, at least for parents, you know, what should they be looking out for?
Bouffard: Well, doctors say that what they see is kids who, within a few days of being sick, will suddenly start not wanting to go to school, or they'll develop a sudden aversion to certain foods, or they'll become fearful and emotional, or some even start having tics or even hallucinations.
Dr. Susan Youngs, Dearborn, Michigan pediatrician and children's rehabilitation specialist, who's treated hundreds of these kids, said that it's totally different than other children's psychiatric conditions.
Begay: Do we know what causes PANS, and do we know how it can be treated?
Begay: Well, doctors and researchers don't have all the answers yet, but there seems to be a consensus that PANS happens when something triggers a child's immune system to start attacking parts of the brain that affect their behavior and emotions. Most cases are effectively treated with a combination of antibiotics, anti-inflammatory medications and steroids.
But in some extreme cases, the kids require something called intravenous immunoglobulin treatment. It's kind of a cocktail of antibodies collected from blood donors that infused into a child's body over several hours, and it's extremely expensive. Health insurance companies say there's a lack of clinical data about the condition, and the Federal Food and Drug Administration has not approved any treatment for PANS and PANDAS.
But advocates note that 16 other states have approved similar legislation to require treatment with IVIG. Cindy Groene of South Lyon, Michigan, became an advocate for the legislation after her son, who's now 22 years old and and a college graduate, was successfully treated after coming down with psychiatric symptoms seemingly overnight when he was in kindergarten in 2009.
Begay: So, this legislation would require that health insurance companies pay for treatments for PANS and PANDAS. I mean, what do the health insurance companies have to say?
Bouffard: The health insurance companies say there's a lack of clinical data about the condition, and they also note that Federal Food and Drug Administration has not approved any treatment for PANS or PANDAS, but advocates note that 16 other states have approved similar legislation that requires treatment with IVIG. So, Michigan would be the 17th state to pass this kind of legislation requiring that health insurance companies pay for IVIG.
Begay: And so, this legislation is bipartisan. Where is this legislation headed now?
Bouffard: Well, now that there's been a bill introduced in the House, advocates say that they're hoping that it will be looked at by the committees in the Senate and in the House. It has to pass committee before it can go on to the full chambers for passage. I did ask what the chances are, and what I'm told is that it might not be great in Michigan right now.
But in the states that passed PANS/PANDAS legislation, it took several sessions and to gather the support that they needed. And once lawmakers really learned enough about the condition, these bills tend to pass with nearly unanimous agreement from lawmakers.
Begay: Ok. Karen Bouffard is a reporter with WKAR. Thanks for being here, Karen.
Bouffard: Thank you Melorie. It's my pleasure.