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'It's like living with a stranger' | The newly discovered syndrome that's changing kids' brains overnight

Pediatric Acute-onset Neuropsychiatric Syndrome is defined by a sudden and severe change in a child’s behavior, likely triggered by an infection.

CHARLOTTE, N.C. — Imagine your child coming down with a common infection like strep, then suddenly turning into a screaming, raging, disconnected ghost of themselves. 

That’s exactly what the Macklin family said happened to their daughter, Makayla.

"She hit all of her milestones, actually exceeded them. Just very charismatic, very funny, very intelligent," Makayla's mother Da-Nay said.

For years, Da-Nay and her husband Chris had no idea what turned their happy, bright young girl into a raging, frightening version of herself -- seemingly overnight.

"It’s almost like a caged animal," Chris said.

"Like something out of a horror movie," Da-Nay agreed.

Da-Nay and Chris Macklin said this sudden shift in their daughter began in 2015 after she was prescribed medication for a lingering cough.

After that, they say, their sweet, quiet girl suddenly changed.

"A majority of the time she was in a rage," Chris said. "Scared, throwing couch cushions, screaming uncontrollably."

Even worse, there was seemingly no explanation.

After dozens of doctor appointments and emergency hospital stays, there was still no diagnosis.

"You’re scared. You’re extremely hurt and frustrated and no one can give you an answer," Chris recalled.

That is, until February of this year; that's when Da-Nay read a Facebook post about Pediatric Acute-onset Neuropsychiatric Syndrome (PANS). It's a newly discovered condition defined by a sudden and severe change in a child’s behavior, likely triggered by an infection.

"The cause of PANS is unknown in most cases but is thought to be triggered by infections, metabolic disturbances, and other inflammatory reactions," Dr. Sujatha Reddy explained.

It's defined as "a clinical diagnosis given to children who have a dramatic – sometimes overnight – onset of neuropsychiatric symptoms...[a] sudden, inexplicable change in children."

PANDAS is an often associated acronym, which stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated w/ Streptococcal Infections (PANDAS). It is essentially PANS linked to a streptococcal infection like strep throat.

This year, Makayla was officially diagnosed with PANS.

Researchers estimated at least one in 200 children in the US alone may have it, too. And there’s no known cure.

For the Macklin family, the worst of it isn’t the $25,000 dollars in medical bills, because most PANS treatments are not covered by insurance. It’s not even the fact that it took so long to find answers.

"I wish that 2 1/2 years ago when we started this journey that someone would have said to us PANDAS or PANS," Da-Nay said through tears.

The worst of it is the fact their princess is hurting and confused.

"She’ll see scratch marks on my arm or hand, daddy, did I do that to you? And she'll break down crying," Chris said. “And I say, yes, baby, but baby there’s nothing you can do to your daddy or your mommy that will stop us from loving you."

"She knows somethings going on; she feels bad about it, but it’s not her fault."

For now, the Macklins are focused on getting through each day.

"We’re still dealing with a child that we can’t explain it’s like having a stranger in your house," Da-Nay said.

They're also raising awareness.

"She is hurting; there are other kids out there hurting because no one wants to listen to them other than their parents and a select few doctors," Chris said.

The Macklins are praying their happy little girl, who they know is in there somewhere, comes back for good someday.

The Macklin's have a GoFundMe set up for Makayla's medical expenses here.

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