Gigi Coulter and her parents are sharing their story to raise awareness about PANS/PANDAS, and to help other families get the treatment they so desperately need.

MELBA, Idaho — On Thursday, Oct. 9, the Zion’s Bank building in downtown Boise was lit up green for a very special reason. It was PANS/PANDAS Awareness Day. October is also PANS/PANDAS Awareness Month. 

PANS and PANDAS affect one in every 200 children, with varying severities. This condition is often misdiagnosed or left undiagnosed. The truth is that many people have not even heard of it. 

That is why an Idaho family is raising awareness. Logan and Mehri Coulter of Melba said their 14-year-old daughter Gianna (Gigi) has been battling PANS/PANDAS for three years. 

It has been so debilitating that she is unable to go to school. Gigi said she wants to share her story to raise awareness and to help other families. 

According to Stanford Medicine, the acronym PANS stands for Pediatric Acute-Onset Neuropsychiatric Syndrome. It is a condition characterized by the sudden onset of multiple neuropsychiatric symptoms in children. PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infection. 

“I just want to make sure every kid gets the same amount of attention and care, and that we’re all able to get the same amount of help,” Gigi said. 

“She can make a friend anywhere, she smiled all the time, she was just a very happy-go-lucky little girl,” Mehri said. 

“She was a star soccer player, did cross country, played basketball, she was a straight A student and just a really funny, outgoing, beautiful girl, and then all of a sudden one day things changed, like a light switch,” Logan said.

For Logan and Mehri, the sudden change in their daughter Gigi was startling. 

“That first flare, her eyes dilated, they turned completely black, and she started screaming at the top of her lungs, and she kept repeating I don’t feel good, I don’t feel good, I don’t feel good,” Logan said. “We were like, what was that? What did we just witness? “

It was almost impossible to console her. Logan said Gigi’s confusing and mysterious symptoms got more and more severe. 

“When she is in flare, she loses the ability to speak, eat and walk, she regresses to acting much younger, and just has repetitive intrusive thoughts that keep her mind in a neurological loop,” he said. 

Gigi explained what it feels like. She said her brain feels like it is on fire, and she has no control over how she responds. 

“It feels like I’m unsafe, I’m just stuck, everything feels really loud and just uncomfortable and just scary,” she said.

The Coulter’s were desperate for answers. They took Gigi to see a local functional medicine doctor, and it was he who first informed them about PANS/PANDAS. 

“He said I think this is what it is. I’ve seen several PANDAS and PANS patients before,” Logan said. “He said I’ve seen this, but I don’t know anybody in Idaho that will see patient with it because it’s so extreme.”  

Carey Crill, ARNP-C, a Certified Family Mental Health Nurse Practitioner and owner of Integrity Mental Health in the Treasure Valley, said PANS and PANDAS are conditions where a child’s mental health can shift almost overnight. Parents describe kids who suddenly develop severe anxiety, obsessive-compulsive symptoms, tics, mood swings, and even regression in basic skills like handwriting or eating. 

“It looks psychiatric on the surface, but the root cause is medical. The immune system is misfiring and disrupting brain function. The difference lies in the trigger. PANDAS is tied specifically to strep infections. After strep throat, the body’s immune response can mistakenly target parts of the brain, unleashing abrupt psychiatric symptoms. PANS is the broader umbrella; it can look the same clinically but may be sparked by other infections, such as influenza or mycoplasma, or even by non-infectious inflammatory processes. All PANDAS cases are PANS, but not all PANS cases are strep-related,” Crill said. 

Crill said that distinction matters for treatment. In PANDAS, clearing the strep infection and supporting immune recovery may improve symptoms, whereas PANS often requires a more comprehensive approach. Steps include addressing infections, calming the immune system, and providing psychiatric support. Although some in the medical community still question these diagnoses, Crill said research strongly supports them, and she says it’s unclear why acceptance has lagged despite the evidence.

In Gigi’s case, the Coulter’s believe she was exposed to toxic mold at their old house, which could have been the initial trigger. She also has autoimmune conditions, and she has strep in her system. They believe all of those factors contributed to her onset. 

“Her body doesn’t know how to kill the strep, so it’s attacking her basal ganglia in the brain. The brain swells, and that’s why she has this range of emotions that she can’t control,” Logan said. “Having tics, either vocal or movement tics, OCD is a big part of her diagnosis, and every single noise we make around her sounds like we are screaming. Once we got the heads up that this could be it, we started researching it, and we were like Oh my gosh, this is our daughter.”

The Coulter’s finally found a specialist out of state who officially diagnosed her. 

“If you can diagnose it really quickly and get them into treatment really quickly, you can reduce the severity of it and hopefully knock it out before it gets worse. When we got diagnosed, she was severe, and already needed what is called IVIG treatment. That’s how you really go after this thing and get rid of it, and at that point, we had to wait for insurance to cover us, so we sat in wait for months,” Logan said. “For months, yeah, that was really hard.”  

IVIG treatment involves infusions of purified immunoglobulins (antibodies) to help fight infections. It’s costly, and it’s not FDA-approved for PANS/PANDAS. A single treatment for Gigi can range from 15k to 35k, and the Coulter’s insurance company, CIGNA, denied them repeatedly. Logan said most insurance companies consider IVIG treatment experimental. Only twelve states mandate insurance coverage for treatment of PANS/PANDAS, and that can include IVIG. Idaho is not one of them. 

IVIG is used off-label for PANS/PANDAS because of its effectiveness in managing severe symptoms. The FDA has approved IVIG for other conditions, but its effectiveness for PANDAS is still being studied. Some clinical trials have shown positive results,

Despite a recent report shared by the American Academy of Pediatrics, the Coulter’s say many doctors and hospitals that they have had experiences with don’t believe PANS/PANDAS exists. 

“Not only is it typically not even recognized by the healthcare systems in Idaho, it’s definitely not covered. So, it’s really tough for the parents here, and they are dying to get help.” Logan said. “So, Mehri and I talked multiple times, and we decided if it gets to that point, we are just going to go to war for our girl.” 

Logan decided to make a bold move. He posted about Gigi’s plight on social media, hoping to get CIGNA’s attention. 

“I posted a video explaining what she is dealing with, and I’m like, CIGNA, my daughter is sitting here suffering. Why won’t you respond?” he said.

The post went viral, and some big-name celebrities shared it—people like billionaire Mark Cuban, actor Jeremy Renner, among others. 

“All of a sudden, my phone just started ringing off the hook. I couldn’t keep up with the phone calls, Mehri couldn’t keep up with the messages. We had CEOs calling us, senators calling us to try to help us out,” he said. “Then, about 48 hours later, CIGNA called. At that point, we knew we were going to get it covered.” 

CIGNA agreed to cover Gigi’s IVIG treatment that month. It was something to celebrate. She would finally be getting the help she needed, and the Coulter’s wouldn’t have to pay out of pocket. The expense of IVIG can be financially devastating for desperate families. 

“The first thing she said when she found out she was going to be covered was, What about the other kids? They need help, too,” Mehri said. 

Families like the Coulter’s do have some support in the Idaho legislature. Idaho Representative Chris Matthias is working to help raise awareness and get coverage for PANS/PANDAS treatments.  

“I can’t imagine having to go to battle with insurance carriers on behalf of my child, without everybody being in my corner,” Matthias said. “What I know about PANDAS is that most of us know nothing about it.” 

Matthias passed a resolution to declare October 9th as PANS/PANDAS Awareness Day in Idaho, to have the Idaho Department of Insurance examine the costs of including IVIG in private insurance plans, and then report on their findings. It’s the start of what he hopes will one day lead to coverage for Idaho families. 

“I think part of what motivates me is to make sure that all of these families, like the Coulter’s, know that they are not alone. We are working hard and in good faith to get them what they need and the treatment that they need so they can take care of their families,” Matthias said. 

The Coulter’s now travel to see Dr. Miroslav Kovacevic, MD, FAAP, a PANS/PANDAS specialist in Illinois, to get her that critical IVIG treatment. IVIG for PANS/PANDAS is not currently available in Idaho, so patients must leave the state to receive the necessary care. They have faith that this doctor’s treatment plan will help Gigi get into remission. 

“The idea is to turn her immune system back on and create good, healthy antibodies to fight what’s happening,” Logan said. 

They are starting to see progress. Gigi now spends about half her day in flare. She needs more costly IVIG infusions, and they are once again battling with their insurance company to get those infusions covered. They said they won’t give up. However, for now, Gigi still can’t go to school or play the sports she loves. 

“I used to go to school every day, see my friends every day, do family things and now I’m stuck in my room,” Gigi said. 

Gigi is bravely blazing a trail for kids battling PANS/ PANDAS by sharing her story and raising awareness. She told KTVB that she has big plans for her future once she starts to feel better and gets her life back again. She just wants to be a regular teenager and go to high school. 

“Anything from raising awareness to raising money or getting insurance approval for kids, I want to at least do something to help,” Gigi said. 

CIGNA responded to our request for comment on Gigi’s case with this statement:  

Cigna Healthcare statement

Navigating a complex disease or condition—especially in the absence of FDA-approved treatments—can be incredibly difficult for patients and their families. We work every day to help people through these incredibly difficult circumstances by guiding them through a complex health care system so they can focus on their health. Families and their physicians have the right to appeal coverage decisions, including through an independent third-party review conducted by external physicians who are not affiliated with Cigna. These independent reviews are binding. This is the process through which Ms. Coulter’s IVIG treatment was approved last year. It would be inaccurate to imply or suggest that social media influenced the outcome.Ms. Coulter’s IVIG treatments will be covered at in-network doctor’s offices through early next year, and we have provided the family with in-network options near their home. Ms. Coulter’s recent IVIG treatment in Illinois will be covered and reimbursed for the dose that was originally requested by her physician and authorized.

The Coulter’s responded to that statement. They believe going public with Gigi’s story helped them get coverage for some of her treatment. They also tell us their specialist is not in network with CIGNA. IVIG for PANS/PANDAS is not available in Idaho currently, and there are no in-network treatment options near their home. They say they will continue to fight for coverage for their daughter. 

For more information on PANS/PANDAS, check out the Northwest PANDAS/PANS Network. This nonprofit is committed to raising awareness, providing education and resources, and helping Idaho families get an accurate diagnosis. 

The PANDAS Network is also an excellent resource for more comprehensive information.Â