Kentucky observes PANDAS/PANS Awareness Day for the first time

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LEXINGTON, Ky. (WKYT) – Carter Cox’s parents say he was a healthy baby when he was born. When Carter turned two, her parents began noticing sensory issues. He was diagnosed with autism when he was three years old.

“But it was kind of a cyclical thing, every once in a while we would go back to very severe symptoms. The things he had improved on were suddenly going to get worse,” Carter’s mother, Becky Webb, said. “We started noticing some issues after he had a strep infection. We continued the PANS diagnosis.

PANS is an acute pediatric neuropsychiatric syndrome. According to Stanford Medicine, PANS is a clinical diagnosis given to children who show a dramatic onset of neuropsychiatric symptoms. PANDAS, a subset of PANS, is a diagnosis given to children who suddenly develop these symptoms as a result of streptococcal infections.

“None of the doctors we spoke to had heard of it,” Webb said.

Carter’s symptoms were dismissed as symptoms of autism. Then Carter caught the flu.

“He woke up the next day and went from a fully functioning 7 year old to a stage where he couldn’t write letters, he started spelling things backwards, he couldn’t read , he couldn’t walk,” Webb said.

That’s when Carter’s parents said they knew it was more than autism.

“There was nowhere in Kentucky that really knew what to do, so we connected and found other families through Facebook who had had similar experiences and they recommended a clinic in Columbus,” said Webb. “They did a panel of blood tests and found all sorts of things that were way off and that’s when we got our diagnosis.”

In total, it took Carter almost four and a half years to get a correct diagnosis.

“Because it took so long, he was in a really, really bad shape and we’re still fighting to get him back to where he was two years ago,” Webb said.

Many symptoms of PANDAS and PANS overlap with other diagnoses such as autism, OCS, or depressive disorders.

“So when you go to the doctor and they see this little snapshot of what you have, it’s hard to realize that there’s an actual physical issue underneath that’s causing the problem. We were able to see it because we know our child and we see him every day. We knew this was not typical behavior. Yes, he is autistic but it is beyond that. It is something beyond what we live normally,” Webb said.

PANS is an inflammatory brain disorder, occurring when an erroneous immune response affects the brain. Anything that causes inflammation can cause a flare-up, such as loose teeth, seasonal allergies, or common levels of indoor mold. When Carter’s family found mold in their house, they had to leave.

“We left everything a year ago to move away from it and we found ourselves, due to things beyond our control, in the same situation in our new house and recently had to move on from there and leave everything again. It becomes a huge financial burden on families and an emotional burden,” Webb said.

Due to the lack of PANDAS/PANS awareness, Becky sent a request to Governor Andy Beshear for the proclamation of October 9 as PANDAS/PANS Awareness Day.

“It came in the mail and he was so proud and we were proud and I was like ‘You know, this is something, you’re helping make history here. Nobody should have to go through what you’ve got lived,” Webb said.

Webb’s advice to parents in his situation is to trust your instincts, document the symptoms, and keep standing up for your child.

Carter’s advice to other children with PANS is to “just be who you are and try to do your best, be yourself and have a good day.”

“Hold on, right? There is help,” Webb added. “Yeah, hang in there. There is help,” Carter added.

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