If you would have asked Cathy Puckett a year ago if her oldest son, Cameron, would be going to college this fall, she would have told you were delusional.
“This time last year, he was in a catatonic state,” Cathy Puckett, of Hot Springs, said. “He had been nonverbal for days and had not been eating or drinking.
“It was almost like he was completely shutting down. To look at him, he is not even the same kid.
“He is a man now, he just turned 21 (on Aug. 13). This is a miracle, sitting right in front of you,” she said.
Last September, Cameron was diagnosed Pediatric Acute-onset Neuropsychiatric Syndrome or PANS. According to www.pandasnetwork.org, PANS occurs when an “infectious trigger, environmental factors, and other possible triggers create a misdirected immune response results in inflammation on a child’s brain.”
As a result, the child begins to “exhibit life changing symptoms such as OCD, anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, restrictive eating, and more,” the site states.
According to the website, the disease affects as many as 1 in 200 children.
But to even get the right diagnosis was an uphill battle.
“In all the prior diagnosis that he had gotten, none of that really fit into what his symptoms truly were,” Cathy said. “They were scattered all over the place.
“I knew there was something more to it.”
She said every time Cameron got sick, his whole demeanor would change.
“He would shut down, his eyes would gloss over,” she said. “He would become more socially withdrawn.
“I knew there was something more to it than just depression bringing this on.”
It wasn’t until Cathy found a link on Facebook to an article that it all suddenly clicked.
“It was about this little girl in Chicago, and I started reading her symptoms, and I was like, ‘This is Cameron,’” Cathy said. “Everything matched up. This is what we are dealing with.”
She said they took the article to their primary care doctor in Hot Springs.
“I don’t know what this is. I don’t know what you want me to do. I don’t even know how to test for it,” Cathy said the doctor told her. “But he looked at me and said, ‘If you can figure out how to test for it, I’ll help you.’”
Cathy said she went home and did some research and found a testing center called the Cunningham Panel from Moleculera Labs in Oklahoma.
“I took it back to our doctor and he was willing to order that kit,” Cathy said. “Of course, insurance doesn’t pay for something like that, we had to pay $1,000 out of pocket to get this test done.
“In the meantime, Cameron had gotten completely worse. It was horrible.”
On Sept. 21 of last year, they finally received the call that Cameron was positive for PANS.
“And things needed to be done quickly because his levels were so high,” Cathy said. “The hospital that he was staying at was willing to start the protocol of the antiviral and high dose antibiotics.”
Once Cameron was released from the hospital where he was staying for psychiatric treatment, they traveled to Illinois in October to do his very first intravenous immunoglobulin, or IVIG, under the care of Dr. Miroslav Kovacevic.
“Because we couldn’t find anybody in the state of Arkansas to do it,” Cathy said.
She said the IVIG floods your system with antibodies, but she said the first treatment was basically a flop.
“It seemed like he got worse,” Cathy said.
In February of this year, Becky Wallace — who met Cathy through a mutual friend — told her that Saline Memorial Hospital in Benton was willing to take Cameron’s case.
Cameron received his first IVIG treatment at Saline Memorial in February under the care of Dr. Jana Jennings. This time it was more successful.
“I believe there is a big connection to vitamin deficiencies,” Cathy said. “Once he was being treated for that with banana bags [IV fluids containing vitamins and minerals], things started to get better.”
His final IVIG treatment was in May. But on Aug. 16, after 21 weeks, Cameron finished his last IV supplement bag at Saline Memorial Hospital in Benton.
“When we first came to Saline on Feb. 8, Cam was extremely sick,” Cathy said. “Things went bad fast for him, but on that day six months ago, we were met with smiling faces and caring hearts.”
“It started out pretty rough,” Cameron said. “I was pretty sick. When I got diagnosed, things started to get a lot easier.
“I had treatment that helped out in my thinking and helped clear up a lot of things. … It was easier knowing what it was and that I could fight something that I knew what it was.”
Wallace had a 13-year-old son, Max, who was diagnosed with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections).
“Me and Becky became really good friends through this disease,” Cathy said. “Max and Cameron were fighting the same battle, the outburst and the rages.
“It was a mirror image of symptoms. Having a kid with this disease, there are not specific steps yet known to take to actually treat it. No set protocol. So we would compare notes daily.”
Max was diagnosed with attention-deficit hyperactivity disorder at age six. It wasn’t till he was about 12 years old was he appropriately diagnosed.
“He was about 10 when he truly declined,” Wallace said. “He lost some of his social skills and when he entered puberty, the rages increased.
“Those just got increasingly intense the older he got.”
Max died by suicide on Christmas Eve of 2016, weeks before he was scheduled to start the IVIG treatment.
“We didn’t have any signs at all that he was suicidal,” Wallace said. “He had rages, but that was typical with PANDAS.
“He got so upset that he took his life. But he had done nothing different than what he done before.”
Puckett said that’s when Wallace made a vow.
“She was not going to stop helping all these other kids fighting this disease,” Cathy said. “Through Max’s story, I think it really opened the eyes of the medical community, because then they realized that this is real.
“It’s life or death with these kids. It opened their hearts and helped Cameron here.”
Wallace said Max changed almost overnight.
“He just woke up a different person,” Wallace said. “I thought it was just an onset of his ADHD. … But if you notice any oppositional behavior, test them for strep. The quicker it is treated, the better off you’ll be.
“The longer it goes undetected, the more the antibodies are attacking the brain, there is a point of no return and it can cause permanent brain damage.”
Cameron, who graduated from Hot Springs Lakeside in 2015, started showing signs for PANS when he was a junior in high school. He became less social and had a disinterest in football and other sports he previously enjoyed.
“Our house was one that everybody came to,” Cathy said. “We had kids coming in and out all the time.
“Cameron was the type of the kid who everyone wanted to be around. Things changed in high school. He became really withdrawn.
“It kind of started with football. It got to the point, where he just didn’t enjoy it. He lost enjoyment for life.”
Fast forward to today, Cameron just finished his first two weeks at the University of Central Arkansas in Conway. He plans to major in business. His brother, Brannon, graduated from Lakeside in May and is attending college at National Park College in Hot Springs.
“It is tough, you really have to stick together as a family,” Jason Puckett, Cameron’s dad, said. “There is a PANS and PANDAS site on Facebook and it is sad to see all of the thousands affected by it.
“It can disrupt your whole family. A lot of homes have split ways, lost their home and lost their marriage. You have to stick together and have faith.
“Cameron has always been one of those kids I don’t have to worry about. He is so smart, so strong and so mature mentality. He is way beyond what I was at his age.”
At the annual Amplify music festival in Benton on Aug. 25, Cameron and Max were recognized on stage. The festival’s co-director Matt Brumley, who also serves as the director of the Saline Memorial Health Foundation, said a portion of the money raised from the festival will go toward PANS and PANDAS research.
“Max’s diagnosis with PANDAS was one of the first I have ever heard of, and that was less than a year ago,” Brumley said. “We have learned so much more since that time.
“Max’s life, struggle, and death is what has ignited people to learn about this. Ultimately, that is what enabled Cameron Puckett to receive his treatment.”
Staff writer Sam Pierce can be reached at (501) 244-4314 or spierce@arkansasonline.com.