Parents united by rare neurological disorder lobby legislators to get disease recognized

A parent wears a t-shirt with memorial PANS and PANDAS ribbon on it to remember Max Wallace, who took his own life in 2016 due to mental anguish his mother says was caused by PANDAS. (Photo: KATV)

It's an auto-immune disease that affects the brain, resulting in behavioral issues that present as disorders like OCD or autism. It's pediatric acute-onset neuropsychiatric syndrome, or PANS - or it's sister disease PANDAS.

Several dozen Arkansas parents say their children have been diagnosed with either PANS or PANDAS, but because the disorders aren't widely recognized in most medical circles, treatment is hard to come by and isn't covered by health insurance. It's why those parents have taken their fight for recognition to Arkansas lawmakers.

Becky Wallace, said her world was flipped upside down due to PANDAS or pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections. Wallace said the disease caused her seemingly normal son to develop a multitude of mental health problems.

"All of this happened overnight," said Wallace.

Doctors believe Wallace's son Max developed PANDAS from a case of strep throat. It took years of going to different doctors, and years of different diagnoses to finally find a doctor who told Wallace her son might have PANDAS. Tests would prove his diagnosis, but treatment came too late for Max - he would end up taking his own life due to the mental anguish at age 13.

"Had my child received treatment and diagnosis sooner, I don't believe we would be in the situation we are in now," said Wallace.

At Monday's legislative subcommittee meeting on PANS and PANDAS, Wallace sat next to Hot Springs mom, Cathy Puckett. Puckett said her son Cameron's PANS diagnosis came just in time.

"I was told that my son would never probably function normally in life," said Puckett. "He had misdiagnosis of bi-polar disorder, schizo-effective disorder and lastly schizophrenia."

Puckett said Cameron was given multiple IVIG treatments, combined with antibiotics that appear to have worked. Puckett's son is now in his second year at UCA. But the medication and sessions to treat Cameron's PANS were outrageously expensive.

"The very first IVIG treatment that my son Cameron had cost us $111,000," said Puckett.

She can afford the treatments, but Puckett knows other families suffering cannot. That's why Puckett is hopeful the state will recognize the disease and get health insurance providers covering the treatments.

And while insurance coverage is needed, parents affected say most neurologists won't even see their children because the disease isn't recognized. PANDAS was only written about for the first time in 1998. Puckett and Wallace said the only doctor that would treat PANS or PANDAS here in Arkansas recently moved his practice out of state.

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