Kentucky observes PANDAS/PANS Awareness Day for first time
PANDAS/PANS is an often misdiagnosed brain disorder.
LEXINGTON, Ky. (WKYT) - Carter Cox’s parents say when he was born he was a healthy baby. When Carter turned two, his parents started to notice some sensory issues. He was diagnosed with autism by the time he was three.
“But it was sort of a cyclical thing, every once in a while we would come back to just really sort of severe symptoms. Things that he had gotten better from would all of a sudden get worse,” said Carter’s mom, Becky Webb. “We started noticing some issues after he had a strep infection. we pursued the PANS diagnosis.”
PANS is pediatric acute-onset neuropsychiatric syndrome. According to Stanford Medicine, PANS is a clinical diagnosis given to children who have a dramatic onset of neuropsychiatric symptoms. PANDAS, a subset of PANS, is a diagnosis given to children who suddenly develop these symptoms following streptococcal infections.
“None of the doctors we had talked to had heard of it,” said Webb.
Carter’s symptoms were dismissed as autism symptoms. Then, Carter got the flu.
“He woke up the next day and he went from a fully functioning 7-year-old to he couldn’t write letters anymore, he started spelling things backwards, he couldn’t read, he couldn’t walk,” said Webb.
That’s when Carter’s parents say they knew this was more than just autism.
“There was nowhere in Kentucky really that knew what to do so we got online and we found other families through Facebook who had had similar experiences and they recommended a clinic in Columbus,” said Webb. “They did a blood work panel and found all kinds of things that were way way off and that’s when we got our diagnosis.”
In total, it took almost four and a half years for Carter to get a proper diagnosis.
“Because it took so long, he was in really really bad shape and we’re still sort of fighting to get him back to where he was before two years ago,” said Webb.
Many of the symptoms of PANDAS and PANS overlap with other diagnosis such as autism, OCS or depressive disorders.
“So when you go into the doctor and they see this little snapshot of what you’ve got going on, it’s hard to realize that there’s an actual physical issue underneath that’s causing the issue. We could see it because we know our child and we see him everyday. We knew this is not typical behavior. Yes, he’s autistic but this is beyond that. This is something beyond what we normally experience,” said Webb.
PANS is an inflammatory brain disorder, occurring when a misguided 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 home, they had to leave.
“We left everything a year ago to get away from it and we ended up, due to stuff beyond our control, in the same situation in our new house and have recently had to leave there and leave everything again. It becomes a huge financial burden for families and emotional burden,” said Webb.
Carter receives Intravenous Immunoglobulin (IVIG) every eight weeks.
“Because so many doctors don’t know what’s going on, insurance also doesn’t know what’s going on. Our first IVIG treatment, they’re $18,000 a piece and our first one was out of pocket because insurance doesn’t want to cover it because there’s not enough research supporting the results,” said Webb.
Since starting IVIG treatments, Carter’s parents say they’ve noticed a number of positive changes. He has been able to return to school after having to be homeschooled due to being too sick.
Webb says that with the help of Carter’s doctor, they were eventually able to get their insurance to cover Carter’s IVIG treatments. Currently, only seven states in the United States mandate individual and group commercial health insurance policies to cover the treatment of PANDAS, PANS, or both: Arkansas, Delaware, Illinois, Indiana, Maryland, Minnesota, and New Hampshire.
“His prescription medications are covered. The $500 in supplements that he takes a month are not. That’s true of all of the children whose parents we’ve talked to. It’s all out of pocket. We got very lucky that we finally got insurance to cover the IVIG,” said Webb.
Due to the lack of awareness of PANDAS/PANS, 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 ‘Ya know, this is something, you’re helping to make history here. No one should have to go through what you’ve gone through,” said Webb.
Webb’s advice for parents in her situation is to trust your gut, document symptoms and continue advocating for your child.
Carter’s advice for other kids with PANS is to, “just be the way you are and try to do your best, be yourself and have a good day.”
“Hang in there right? There’s help,” added Webb. “Yeah, hang in there. There’s help,” added Carter.
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