This is the final part of our four-part series on youth mental health in Oklahoma. Find all the articles in the series at here.
At age 5, Leah Hubler and her older brother developed a cold over Christmas break. Her brother got better. Leah didn’t. Though her cold symptoms eventually dissipated, a dry cough persisted. Most concerning, Leah’s personality changed dramatically.
“She did so well at school,” said Leah’s mom, Sarah Hubler. “But at home, she was obstinate and oppositional. She would rage over minuscule things. It was bizarre.”
Minor disappointments, like a friend canceling a playdate, would send Leah into a prolonged screaming rage. Trying to comfort her by holding her would eventually turn to restraining her to keep her from hurting herself. Hubler says they couldn’t speak rationally or use reasoning to calm her down. Leah began to fear bedtime, wailing at the sight of her pajamas or hiding under laundry in her parents’ room to stay close to them.
Six months later, Leah’s cough, which hadn’t been helped by steroids or inhalers, began to be accompanied by hand flapping and violent head nodding, similar to whiplash. Hubler realized the behaviors were tics.
“For an otherwise normal child to have a windfall of neurological problems and tics is not normal,” said Hubler. “Within six months, our normal, happy, cheerful, bright child has turned into this.”
In the midst of that tumultuous six months, Leah and her parents made countless trips to the pediatrician, Leah began cognitive behavioral therapy and was diagnosed with Tourette’s Syndrome, anxiety disorder, Oppositional Defiant Disorder and Attention Deficit Hyperactive Disorder. After a year of researching Leah’s symptoms, Hubler realized she’d never Googled all her symptoms together. When she did, the word PANDAS appeared on her screen.
“It sounded like someone had followed Leah around and documented her life,” said Hubler.
Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep Infections, or PANDAS, is believed to be triggered by an infection. When an infection like strep occurs, the body develops antibodies to fight it. In a child with PANDAS, those antibodies instead begin to attack healthy tissue in the brain responsible for movement and behaviors, leading to tics, neurologic and psychiatric symptoms, mirroring mental health conditions. Unlike the treatment of a mental health condition using psychotropic drugs, PANDAS requires antibiotics to treat the strep infection.
At Leah’s 6-year well-check, her father mentioned PANDAS. The pediatrician had heard of the disease, but like many other medical professionals, was skeptical, calling PANDAS a controversial and clinical diagnosis. Though Leah had no symptoms of strep, she was tested for it, and the 48-hour culture showed a raging strep infection. Leah immediately started antibiotics.
“By days three and four she was calmed down,” said Hubler. “By day six, her tics were gone. I said ‘this can’t be Tourette’s because that can’t be cured by antibiotics.’”
Hubler had read that if Leah did have PANDAS, she needed to be on antibiotics much longer than 10 days. Leah’s pediatrician reluctantly agreed to place her on a 30-day course, and the family searched for a doctor who would treat her long-term. After being turned away by immunologists, rheumatologists and neurologists, they finally found a pediatric immunologist at the University of Oklahoma who agreed to keep Leah on antibiotics. Because of the lack of PANDAS knowledge in Oklahoma at the time, the Hubler family had to take Leah to Florida for an official diagnosis. Though Hubler said Leah is in a “decent place” now in terms of symptom management, she’s not the girl she once was.
“She was my little girl, my only girl,” said Hubler. “She was my twirling princess, tea party, magical fairy girl. I literally feel like PANDAS stole her childhood from her.”
What is PANDAS?
Researchers first became aware of PANDAS in the 1990s when they found a group of children with sudden onset OCD and tics also had recent strep infections. In 1995, the Journal of the American Academy of Child and Adolescent Psychiatry first published the syndrome, called PITANDS, which could be triggered by various infections. In 1998, it was renamed PANDAS, focusing on the strep infection trigger to better raise awareness and research treatment options. The same year, Dr. Madeleine Cunningham, a rheumatic fever expert at the University of Oklahoma, was recruited by Dr. Susan Swedo at the National Institute of Mental Health to help study what autoantibodies from strep could do to the brain. In 2010, PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome) became the broader name for the disorder, removing the requirement for strep as the infectious trigger. PANS can be caused by many other infections like herpes, mononucleosis (mono) or Lyme disease, as well as environmental triggers.
PANDAS and PANS typically occur between ages 3 and 12, and according to the PANDAS Network, they affect one in 200 children. Children with PANDAS experience a wide variety of symptoms like OCD, eating restrictions, tics, behavioral regression, anxiety, irritability, sleep disturbances, depression, impulsivity, changes in handwriting, anorexia, aggression, sensory abnormalities and emotional swings. Like Leah, often children with PANDAS or PANS have been diagnosed with OCD, ADHD, Tourette’s, Autism Spectrum Disorder, anorexia or other mental health conditions that don’t respond fully to neuropsychiatric drugs.
Cunningham and Dr. Craig Shimasaki founded Moleculera Labs in Norman in 2013 to develop testing to assist physicians in identifying and treating people with autoimmune neuropsychiatric disorders like PANS and PANDAS. With the Cunningham Panel of tests, which measure the levels of antibodies directed against antigens in the brain and their ability to interfere with the brain’s neurotransmitters, Moleculera regularly receives specimens from across the world. Shimasaki reports that a survey of parents of children with PANDAS/PANS found, in general, they had taken their children from five to as many as 15 doctors prior to finding a diagnosis.
“Typically these children we test have been ill or had ongoing symptoms for a fair amount of time,” said Shimasaki. “Very few things have helped them medically or they are not getting better.”
Though the clinical criteria for PANDAS is abrupt onset of symptoms, sometimes overnight, Shimasaki said every child may not fall into that category. Instead, the disorder can be progressive, where symptoms gradually get worse over time and with additional infections, like what Celeste Roy’s son Christopher experienced. After successfully homeschooling Christopher for first grade, Roy placed him in private school for second grade. He got sick often, including contracting strep a number of times.
“Out of the blue, I started noticing his handwriting changing,” said Roy. “He was no longer writing how I taught him. It was illegible.”
Christopher developed a fungal infection under his nails that wouldn’t clear up, experienced severe separation anxiety, exhibited sensory abnormalities, had joint pain and was diagnosed with OCD, anxiety disorder and bipolar disorder. Roy reverted back to homeschooling. With three older children, Roy knew what she was experiencing with Christopher was not normal. The family saw countless doctors and therapists trying to determine a cause.
It wasn’t until Roy met Cheri Coker about a year ago that she heard about PANDAS. Coker had been to upwards of 20 doctors with her son, Kadein.
“Doctors told me that he was bipolar or had ADD or Autism Spectrum Disorder,” said Coker. “But I would get online and look at kids who were bipolar and think ‘This can’t be right. Kids who are bipolar aren’t just bipolar when they’re sick.’”
Kadein was also diagnosed with OCD and anorexia. Coker first heard about PANDAS after reading a study by Cunningham.
“I thought ‘This has to be it,’” said Coker. “So I called Moleculera and said ‘I’m pretty sure my son has PANDAS and we can’t get help.’”
Aided by the Cunningham Panel, Kadein’s physician officially diagnosed him with PANDAS three years ago.
“I thought, ‘Yes, we can finally get treatment,’ but it’s not like that,” said Coker. “The guidelines [to] treat it aren’t set yet.”
Kadein has been on multiple antibiotics and antivirals. He continues to battle anorexia and OCD and bipolar-like symptoms. Children with PANDAS often experience flares when they get an infection or when they’re exposed to someone with strep. Coker removed Kadein from school in December because he was constantly sick.
“Anything that elicits an immune response can trigger a PANDAS flare,” said Hubler. “The immune system isn’t just trying to fight foreign invaders, it identifies natural proteins in the brain as being the enemy and attacks them, causing OCD, ODD, ADHD and tics, while the rest of us just get a sore throat.”
Leah, Kadein and Christopher can often sense when someone around them has strep, even before that person is aware of it.
“Leah will call me from school to say ‘Mom, someone here has strep and I’m starting to tic really bad,” said Hubler. “Her anxiety flares and we have to remove her from the situation.”
Even though Leah doesn’t always contract strep, the exposure resuscitates her symptoms, which can last for three to four days. Antibiotics no longer keep Leah’s symptoms at bay entirely but she can sleep in her own room with her door shut and can better manage her symptoms or tell her parents when she needs help.
“When Leah first got sick and we put her on antibiotics, I thought we’d have two to three months of this and then she’d be cured,” said Hubler. “I didn’t realize this would be such a long-term, permanent thing. She’s about 80 to 85 percent back, and I’m going to have to be okay with that.”
Hubler says Leah’s anxiety still gets the best of her. Situations that would cause typical pre-teens some stress can make Leah physically ill.
“I don’t want her to use PANDAS as a crutch to shrink from every bad situation in life, but you can’t wish away her brain’s organic reaction,” said Hubler.
Like many parents of kids with PANDAS, Roy has had a difficult time finding a doctor and a treatment method that works for Christopher and their family can afford.
“There was relief in knowing that I finally knew what was going on,” said Roy of Christopher’s diagnosis. “Then panic to find out if my son will have to deal with this for the rest of his life. And if there’s a doctor out there willing to help him.”
Hubler feels reassured that there are now PANDAS resources in Oklahoma, including a pediatric immunologist Leah has been seeing for several months, a pediatric psychiatrist in Edmond and a physician group in Del City that treats PANDAS patients with a combination of natural remedies and western medicine. Shimasaki applauds the few physicians in Oklahoma who understand and are willing to treat kids with PANDAS, but says they are overextended because patients flock to them.
“There are a lot of dedicated physicians around the country who are taking care of these kids, but they are overworked and have long waiting lists,” said Shimasaki.
Many parents of kids with PANDAS are hesitant to use psychotropic drugs, often because they’ve tried them to no avail or they’re frightened of the potential side effects. Though Hubler understands that sometimes those drugs are necessary to “turn down the noise so they can heal,” she’s not certain they’re best for Leah. Christopher’s side effects from a psychotropic drug make Roy leery of anything other than supplements and Zoloft to help with his anxiety and OCD. She’s removed sugar and dairy from his diet, and he also takes supplements, vitamins, pre and probiotics and an appetite stimulant, but he still has regular joint pain, headaches, stomach pain and anorexia.
In addition to the emotional toll on families, tests, medication and symptoms management leave families financially strapped. Shimasaki said Moleculera is doing its part, and that the $925 they charge for the Cunningham Panel, not always covered by insurance, doesn’t cover all of the small company’s costs. He applies for grants and raises capital from investors, local institutions and parents whose kids have recovered from PANDAS to keep their costs as low as possible. Hubler is angry that insurance companies aren’t doing their part, not even recognizing the disease with a diagnosis code or approving intravenous immunoglobulin therapy (IVIG), which has been found to be a successful treatment option for some children with PANDAS.
“Insurance companies stand in the way between our children getting better because they refuse to recognize PANDAS,” said Hubler. “They won’t approve IVIG, which they’ve found is essentially like a reboot of the immune system. Families lose their homes trying to get their kids back.”
IVIG involves a two-day course of treatment in which a patient receives blood plasma containing immunoglobulin, or antibodies. The plasma is from thousands of donors, ensuring patients receive a broad range of antibodies to protect against infections and diminish PANDAS patients' neurological symptoms. Shimisaki says IVIG “can be very effective but is very expensive.” The treatments can be anywhere from $10,000 to $20,000, and children may require more than one.
“If this is the treatment that’s actually going to treat this disease, all they are doing is hurting these kids,” said Roy. “Stop trying to make a buck and start trying to save our children.”
Kadein recently received IVIG, costing the Coker family $16,300. The results were immediate and breathtaking.
“By the end of the day, it was like he came alive,” said Coker, who added that it was only by the grace of God they were able to scrape the funds together for IVIG.
Coker hopes to appeal to their insurance company to approve coverage for additional treatments by showing how well Kadein’s done after the first round of therapy. Shimasaki echoes the need for better treatment therapy that’s less expensive and easier to access. He hopes Moleculera’s further research into markers in the brain that autoimmune antibodies could be directed toward will help in the discovery of new treatments. Though there is progress being made on the insurance front, like a bill awaiting the Illinois governor’s signature that requires insurance companies to cover treatment for PANDAS and will hopefully spur similar laws in other states, Hubler worries it will be too late for Leah.
“As a parent, you’re dealing with the present, but the long term looms,” said Hubler. “The fact that she was two-and-a-half years from onset to diagnosis … there is long-term, irreversible damage that can be done.”
When Leah was first diagnosed, Hubler read on PANDAS Network that as many as 92 percent of girls see a remission or grow out of it when they hit puberty. Though a long way away for Leah at the time, that statistic was heartening. The team at Moleculera receives Christmas cards, report cards and pictures of kids playing football who, thanks to diagnosis and treatment, have overcome PANDAS. But Hubler sees more and more teens and young adults, like Kadein and Christopher, still struggling with the disease.
Leah loves to draw, sing and act, which help diminish her anxiety and tics, and she’s written a guide book for parents and kids with PANDAS. She struggles with and gets embarrassed by her rage. Kids at school make fun of her tics and she wishes people realized she can’t always control her responses.
“My symptoms and tics hurt a lot,” said Leah. “I try to do everything I can to stop, but it’s really hard.”
Hubler said Leah’s anger surfaces when she’s bored and that she craves adventure and excitement. She worries how that will affect Leah as she matures and develops relationships with the opposite sex. Hubler herself experiences PTSD, which is why she says it’s critical for parents to find support groups through the PANDAS Network or the Oklahoma PANDAS Facebook group, where Roy and Coker met.
“We live every day constantly dealing with our stressor,” said Hubler. “It’s not a battle that you get away from; our war lives with us so we are never released from that.”
Coker has been immersed in advocating for her son, fighting insurance companies, doing her own research and seeking out support since Kadein was diagnosed. Though she believes in the wisdom of the medical community, Coker warns that doctors don’t know everything and parents should trust their intuition. Roy hopes that parents banding together to petition insurance companies to pay for treatment and demand doctors treat patients cost-effectively will change the direction of her own journey, and others'. She worries about Christopher’s flares, which usually involve rage and insomnia, hurting him or others.
“Nineteen years of watching my child deteriorate,” said Roy. “I’d give up my life today if my child could be free and clear
Coker remains hopeful that Kadein’s IVIG treatment will heal him completely, and that if he needs additional treatments, their appeal to their insurance company to cover it will be accepted. Coker’s daughter was recently diagnosed with Lyme disease and PANS, for which she’s on antibiotics and anti-fungal medications. None of her treatment is covered by insurance. In the meantime, Coker takes heart in knowing their family’s trial has not been entirely in vain.
“Everything happens for a reason,” said Coker. “I [have been] able to help a lot of other people along the way.”