‘Baby steps’ for Georgia children with misunderstood behavior changes

The acronyms for these frequently misdiagnosed health conditions conjure up images of baked goods and adorable zoo animals. But the frustration of children and their families fighting for years to receive a correct diagnosis and proper care is anything but comforting.

Before Gowen’s son was diagnosed with PANDAS, he developed sensory, eating and behavioral issues. Over the years, the family spent thousands on therapy, medical testing and treatment that their insurance initially didn’t cover. And none of the Atlanta medical professionals the family consulted understood the condition.

Her younger son and older daughter, now 10 and 16, were also diagnosed with PANDAS.

“It disrupted every aspect of our family life.”

A bill that unanimously passed the House last month and is expected to be considered in the Senate within the next week would provide insurance coverage for some treatments and encourage doctors to diagnose the disorders, which can easily be confused with more commonly recognized disorders such as Attention Deficit Hyperactivity Disorder, depression or autism. National and Atlanta pediatric leaders also are starting to address the conditions.

PANDAS usually results from strep, a bacterial infection that can cause sore throat, pneumonia, sepsis or skin infections. PANS often is linked to other bacterial, viral or environmental irritants. A child with PANS or PANDAS, typically from 4 to 10 years old, starts having a sudden, dramatic personality change revealed as an obsessive-compulsive disorder, anxiety, tics or other abnormal movements, according to the PANDAS Network, which helps families with both conditions.

The PANDAS Network reports that the conditions affect 1 in 200 children in the United States. But the nonprofit admits this is a conservative estimate based on data more than a decade old, including Centers for Disease Control and Prevention records. The Southeastern PANS/PANDAS Association estimates as many as 12,500 children in Georgia are affected by the conditions.

“It is extremely difficult to nail down a number with so many children going undiagnosed and misdiagnosed,” said Heather Ward, SEPPA president, who lives in Senoia. Her three children have PANDAS, which is believed to be inherited.

Alternative medicine

In Georgia and elsewhere, care for children with PANS and PANDAs has fallen to about a dozen mental health providers and clinicians with specialized training in more alternative integrative, functional or holistic medicine, or pediatricians in private practice willing to take the time for appointments and consider nontraditional treatments.

Georgia families of children with PANS and PANDAS and the clinicians who treat them, along with some legislators, are pushing for insurance coverage and recognition for the conditions.

To date, pediatricians have lacked clear direction about how to diagnose and treat the conditions. The American Academy of Pediatrics recently stopped short of offering clinical guidance in a new report on PANS, the umbrella condition including PANDAS.

“The AAP recognizes that PANS is likely a valid diagnosis, although the diagnostic process is challenged by a lack of well-accepted evidence to guide the clinician. Much remains unknown about the condition,” according to the AAP report released last month.

The report “explicitly acknowledges the pressing need for research” to fully understand the condition and committed to working with other doctors and scientists to learn more about it and develop more evidence to support evaluation, diagnosis and treatment.

Georgia’s main pediatric hospital, Children’s Healthcare of Atlanta, also is evolving when it comes to treating kids with such conditions.

“Seeing a need from the community to help evaluate children with challenging neuropsychiatric symptoms and help determine if their symptoms stem from psychiatric or neurological conditions, Children’s opened a Neuropsychiatric Care Clinic in December within the Zalik Behavioral and Mental Health Center,” according to a spokesperson with the pediatric hospital.

As of this month, six patients have been scheduled in the new clinic, and four patients have been seen, the spokesperson said.

Lack of medical training

Melissa Smith, a Watkinsville nurse practitioner specializing in pediatric mental health and PANS/PANDAS, acknowledges the progress by legislators and some pediatric organizations. But she doesn’t believe they address the root of the confusion over the conditions – the lack of medical training for clinicians about how to treat the disorders.

Credit: Pitter Goughnour of Pitter Productions Photography

Credit: Pitter Goughnour of Pitter Productions Photography

For instance, she doesn’t believe most clinicians know to check for possible causes of PANS such as bacterial infections from mold and heavy metals. They try to identify a single cause and treat that specifically, said Smith, one of the founders of the North Georgia PANS Network.

Smith also is concerned that the legislation only provides insurance coverage for a standard course of treatment that doesn’t help all patients. The first line of treatment tends to be antibiotics and steroids and if those don’t work, intravenous immunoglobulin (IVIG) therapy is another option. IVIG is immune system antibodies from healthy donors infused through a vein in the patient’s arm to boost their natural immune system, according to the Cleveland Clinic.

The PANDAS Network says IVIG “is proven to help the majority of children with PANDAS/PANS. However, health insurance claims are often denied.”

The bill in the Senate generally requires insurance coverage for health care services related to the conditions based on “nationally recognized clinical practice guidelines.” But the final legislation is expected to include coverage for IVIG, which can cost families thousands.

Smith said she’s excited about insurance coverage for the expensive procedure to help some patients, but she also believes there are other effective treatments. The key to improving the health of her PANS patients, she said, is treating their gastrointestinal tract or digestive system.

Seeking out-of-state care

Gowen said the progress made by legislators and pediatric organizations is “the babiest of baby steps” and “10 years too late,” at least for her family. She declined to name her children to protect their privacy.

A SEPPA founder and former president, Gowen learned about IVIG on her own. The family was able to pull some strings and travel with their middle child to a neurologist in Washington, D.C., trained in treating PANDAS. She recommended IVIG, but it would have cost $10,000 for the initial infusion.

Gowen eventually found an Atlanta immunologist and other doctors, in and out of her insurance network, to manage her children’s care. She estimates the family spent more than $100,000 on medical care over the past eight years. She recalls having to step away from her business to care for her children, drain her retirement savings and refinance the family mortgage to cover medical expenses.

Credit: Heather Ward

Credit: Heather Ward

Ward, also a SEPPA founder, said families like hers wouldn’t have to turn to insurance for IVIG if more doctors recognized the conditions earlier and offered antibiotics or other first-line treatments.

“They think if you don’t have strep, you don’t have [PANDAS]. When my oldest was diagnosed, he had mono.” Antibiotics won’t help a viral infection, but he had strep three times within the year leading up to his diagnosis, Ward explained.

Her eldest son Neely’s symptoms began when he was about 4. He was initially prescribed ADHD medicine and wasn’t diagnosed until he was 8. “At that point, he was raging daily, became suicidal, and was constantly sick,” Ward said. His Georgia pediatrician referred him to a doctor in Chicago for IVIG. It cost them $32,000 within nine months, including travel. Now 20, Neely has been in remission for five years, Ward said.

Her daughter Lucy, 16, has had 40 IVIGs in the last three years. She was diagnosed with PANS at age 4, after having pneumonia and strep two times in six months. “One day she was a sweet, kind little girl who slept all night and then she was raging, never sleeping, stuttering and wetting her pants.”

In fourth grade, after the insurance company stopped paying for her antibiotic shot, Lucy tested positive for strep seven times in a year. The family footed $200 every three weeks to pay for the medication. Lucy’s behavior suddenly changed, and within days, she started having uncontrolled seizures.

“She was extremely ill and lost 10% of her body weight in two months,” Ward said. Lucy’s Georgia PANS/PANDAS doctor tried to get IVIG covered by insurance and find specialty care, but the treatment was repeatedly denied, her mother said.

The family’s PANS/PANDAS connections referred them to a rheumatologist at Texas Children’s Hospital. There, Lucy was diagnosed with autoimmune encephalitis (AE), which is similar to PANS and PANDAS because the immune system mistakenly attacks brain cells. PANS and PANDAS are increasingly recognized as a form of AE.

From there, it took almost two years to get a PANDAS diagnosis, a Georgia doctor to take her case and start treatment, and then seven months for insurance to approve the treatment.

The family now meets a $10,000 deductible for Lucy’s IVIG treatments. Ward said that since IVIG is based on weight, the insurance company would have saved if they had approved the treatment when Lucy was younger – and she wouldn’t have gotten so sick.

Diagnosing mental health disorders

Dr. Dale Peeples, a Wellstar MCG Health child and adolescent psychiatrist, said parents of some of his patients question if their children have PANDAS when he sees them for OCD or tic disorders, especially if they’ve had strep.

“PANS has broader cases and it’s a little harder to verify,” Peeples said.

“In terms of diagnosis with my patient population, it can be tricky. These are kids I work with for a while with known OCD, and if they have upper respiratory infection and their symptoms get worse, the question is: Did it get worse because of infection or is this just the waxing and waning of OCD symptoms?” Stress, for example, can make OCD symptoms worse, he said.

Pediatricians can refer their patients to Children’s for a general neurological evaluation and if the patient is appropriate for the new Neuropsychiatric Care Clinic, the child’s health care provider can refer them to Children’s for clinical review, the spokesperson said.

During a two-hour initial evaluation, the patient sees neurology and psychiatry clinicians. The pediatric neurology team will treat children showing “evidence of an organic neurological condition.” Children with psychiatric conditions will continue care at the Zalik Center for Behavioral and Mental Health, which opened in 2023, the spokesperson said.

“Children’s will continue to evaluate the progress of the clinic as we work to ensure we are providing the right treatment for the kids who need it.”