Zoey Fandl is like many other 10 year olds who love Bluey, line dancing, volleyball, violin and piano. But after she was diagnosed with PANS at age 4, her life has also included visiting hospitals and medical centers across the country searching for a cure.

After six years, Zoey easily explains the reality of living with the complex-sounding condition called Pediatric Acute-onset Neuropsychiatric Syndrome/Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. “Basically I don’t have enough antibodies,” she said. “And they attack my brain instead of the sickness or infection and it causes damage to my brain, and it develops differently.”

A child with PANS/PANDAS can be normal one day and become a different kid overnight. A flare usually happens after the child is exposed to any contagious illness. Their antibodies begin to attack their brain and an onslaught of psychiatric, behavioral and physical symptoms can occur. Many parents see symptoms of OCD, separation anxiety, urinary incontinence, sleep problems, food restrictions and rage or aggression. Once the illness is treated, the flare will go away and the child will return to “normal.”

Zoey’s mother Elizabeth explains it to coworkers by telling them that Zoey doesn’t get sick with a fever like a typical kid. Zoey will have symptoms of PANS but when she’s not sick all her symptoms disappear. 

“There’s just so much info that you’re like how do you just say ‘My child goes psycho when she’s sick,’” Elizabeth said.

Looking for support

Zoey celebrated her birthday in March at Children’s Nebraska Hospital in Omaha. She had been released from the hospital a few days after. She had curled up on the couch in her pajamas with Elizabeth where she was proud to show off the bruise on her chest that she earned from a month-long central line. She was excited and cooperative – not the image of a little girl who put holes in two of the Fandl family’s doors last month during a PANS/PANDAS flare.

She had just received plasmapheresis, a process of removing her plasma and replacing it with healthy plasma from a donor. This was a last resort for the Fandl family in the hopes that Zoey’s immune system would improve with healthy plasma, after a flare that had them dealing with multiple calls to 911 and Child Protective Services.

Elizabeth gave her daughter a tired smile, one of a mother who had spent the last month with a child in the hospital. With very little research on the condition and poor care from doctors, Elizabeth had looked to Facebook for help after flares had caused Zoey to pull out her toenails and attempt to crawl out of her skin a few years ago. She had been following an organization called ASPIRE, which acts as a PANS/PANDAS advocacy group, when they posted on PANS/PANDAS awareness day looking for stories.

“So I just posted our story and then Gabriella, the president contacted me and said, ‘Hey, we have never had anyone from Nebraska reach out to us’ and then we just started emailing back-and-forth,” Elizabeth said.

Despite being the first from Nebraska to find ASPIRE, 1 in 200 children have PANS/PANDAS, whereas 1 in 300 children have juvenile diabetes.

Connecting with other families

She met Grace Troupe by chance after Zoey’s occupational therapist connected her with another family dealing with PANS/PANDAS.

Grace has two daughters who have both been diagnosed with PANDAS. It took her five years to get her oldest Violet, 9, diagnosed with many doctors blaming her for her child’s bad behavior.

“I went to all these doctors and they just kept blaming me, which is really traumatic as a mother because I’m in this 150%, I love my kids so much,” Grace said with tears in her eyes.

Like many other children with PANS/PANDAS, Violet’s symptoms appeared almost overnight. Grace described that Violet would start to twitch when she screamed and stopped napping entirely. Despite imaginary friends being fairly common for young children, Violet’s sudden appearance of an imaginary friend scared Grace.

“Violet started talking about how there’s a friend in the corner of her room and it’s name is Chaos,” Grace said.

After suffering herself from long-term COVID, she joined the long COVID Facebook group where she first saw a mom posting about PANS/PANDAS. She immediately connected it to Violet’s symptoms and found a doctor in Iowa.

When her younger daughter Belle, 7, started having similar symptoms, she started looking for an answer and found that mold in their house was the cause. They got rid of the mold and started taking antifungals and have started to see symptoms come down.

Grace has given up trying to describe PANS/PANDAS to people. She now has a graphic she found on Facebook saved to her phone that she pulls out whenever she must explain it to someone. It shows viewers sixteen surprising neuropsychiatric symptoms that could present from PANS/PANDAS.

The two moms wanted to find support in their community and partnered with ASPIRE to hold the first Nebraska PANS/PANDAS ChitChat in October 2024, a monthly support group for parents and caregivers to a child with PANS/PANDAS. They met with other parents who understood the difficulty and grief that came with a PANS/PANDAS diagnosis. Their meetings were hosted in coffee shops until Dr. Phil Boucher offered the Frontier Pediatric Care office for meetings.

Now families come together in a glass walled conference room to discuss treatments, doctors, insurance, legislation, bullying and a whole list of other problems they deal with daily. Many parents mask their frustrations in front of their children, but the support group gives them time to speak honestly.

A doctor’s perspective

Dr. Jason Davis from Lincoln Pediatric Group is one of very few doctors in Lincoln and the surrounding area known by PANS/PANDAS families to be educated on the condition. He describes it as a diagnosis that happens as a process of elimination after all other diagnoses have been ruled out.

He has diagnosed six cases of PANS/PANDAS and seen other possible cases since the early 2000s. The first time he dealt with a PANS/PANDAS patient was one of his business partner’s patients around 2003 or 2004.

“We talked about it a lot because it was weird, and we felt kind of powerless to help out with some of these things and we did what we could,” said Davis.

After that experience, he educated himself so he could provide better care for future patients, but he does understand where other, less educated providers might be coming from.

In medicine, when a doctor diagnoses something, they follow the pathophysiology or steps from a thing happening to the resulting condition. The problem with PANS/PANDAS is that the steps require a huge jump to get from point A to point B. 

Dr. Davis said to get to the conclusion of PANS/PANDAS, you need to start with a child that has been sick with strep or something similar. There might be some sort of residual infection or inflammation and maybe that inflammation is specifically on the brain. If that’s the case, that is what’s causing OCD, disordered eating, and such. 

“It’s like that’s a huge leap and so it was a big reason why people didn’t consider it for a long time because it really made no sense to say that was how it was going to play out,” Davis said.

Speaking up

While Dr. Davis and the other providers at Lincoln Pediatric Group are sympathetic and have seen the effects of PANS/PANDAS on families, a majority of healthcare providers are not. Many families have adopted a policy of only telling a healthcare provider about PANS/PANDAS if they mention it first. The Fandls have had experiences of providers not believing them or lying to them about the treatment they are receiving.

“We don’t mention it unless they mention it first because some doctors don’t treat it, they refuse to,” Zoey said.

Living in secrecy is not easy for many children as it is very draining for them to try to mask their symptoms at school or in public. After several years of secrecy, Zoey made the decision with her parents to take the mask off and start advocating for better PANS/PANDAS care. 

“Zoey is her own advocate,” Elizabeth said. “She knows more things than her mama.”

Zoey explains her condition to her classmates and helps them understand instead of judging. She recently discovered a new nonprofit organization in Lincoln that supports PANS/PANDAS research.

“I’m thinking about actually volunteering at Where There’s A Will and helping spread awareness,” Zoey said.

Future Outlook

After receiving plasmapheresis, Zoey was doing better than ever. She returned to school and her symptoms were minimal, until another flare came on and things took a turn for the worst mid-April. Strep had made its way into the Fandl home, messing with her immune system, and a change in insurance meant she could no longer get regular IVIG treatments of healthy antibodies. If the plasmapheresis had managed her symptoms for a couple of months, she could have had regularly received plasma. Now that her doctors know plasmapheresis didn't work, they are looking at the very last option, which is residential treatment. Zoey would be placed in a treatment center to make sure that she and others around her are safe if her doctors determine that is the best next step. 

“Her violent flares and self harm has been really hard,” Elizabeth said. “She is in so much pain and OCD is out of control.”

Like Zoey, what lies ahead for PANS/PANDAS is also murky. Since there is barely any research on the condition, there is no test or marker for a diagnosis. Grace and Elizabeth discovered the National Alliance for PANS/PANDAS Action (NAPPA) and have started working with them to advocate for national legislation requiring hospitals to incorporate education on PANS/PANDAS and for $5 million of National Institute of Health’s funding to be allocated toward PANS/PANDAS research.

PANS/PANDAS is not rare. It’s just rarely diagnosed because parents and healthcare professionals don’t know enough about it yet. Children are being misdiagnosed, sent to residential treatment or dying by suicide. If Zoey had been diagnosed and treated earlier, she might have never had to advocate for herself or explain what an autoimmune disorder is to other fourth graders. She might have been able to continue playing sports or go to sleepovers with her friends like a regular 10 year old.

There are still a lot of unknowns to what might happen in Zoey’s future. If her doctors send her to residential treatment, they would have to figure out where, how soon and for how long. She might grow out of PANS or it might be something she has to live with for the rest of her life. The research on PANS/PANDAS hasn’t been studied past pediatrics so it is still unclear the lasting impacts the condition can have on Zoey’s brain as she grows up or if it will become life-threatening.

“What we were told is, as the brain develops and puberty happens, she could get better,” Elizabeth said. “Kids get better is what we keep getting told. But when you watch testimonials of kids who are past that, they all say that they don’t get better, they just mature and they know how to live with it.”