CHARLOTTE — It's a heartbreaking and debilitating attack on a child that no parent wants to see. The symptoms are usually dramatic, can come on suddenly, and can include moody or irritable behavior, both vocal and motor tics, obsessions, compulsions, and anxiety attacks.
Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (or PANDAS) is brought on by an infection, and it's more common that you might think.
A Charlotte mother watched her daughter's personality change overnight - before the expensive medical bills and years of treatment.
"It is above and beyond anything you can imagine," Traci Andrews explained.
Now, seeing a smile from her 11-year-old daughter Josie is something she will never take for granted.
"I'm happy about where we are, but I also know that we could go back to that bad place anytime," she said.
Josie's doctor Rosario Trifiletti is an expert on PANDAS and says it affects one in every 200 children, which means it could affect thousands of children in Charlotte. He also says any kind of infection can cause it - not just strep.
"It looks like something very scary is happening to the child mentally," he said. "Parents wouldn't know about this unless they did their own research."
Doctors say bacteria from strep or other infections can hide in the child's body - mimicking healthy cells like those in the brain, skin, joints, and even the heart.
Eventually, the immune system fights back - producing antibodies - but they attack not only the foreign bacteria; but also the healthy cells. Doctors say it causes the symptoms that Josie and so many other children have struggled with.
"It's completely irrational behavior, at the same time, they're begging you to help them," said Andrews.
As Josie's symptoms got worse, doctors went so far as to check for brain tumors. Finally, after six months of torment, she found help. But, it included three blood infusions over two years.
The treatments cost nearly $40,000 out of pocket. To this day, Josie still takes several medications.
But Andrews considers her family fortunate. Some parents search for years to find help for their children suffering from PANDAS, and that's why she's telling her family's story.
"It's not normal for your child to be completely normal one day and the next day have psychiatric symptoms," she explained. "Keep digging and being an advocate for your child."
For parents who think their child maybe suffering from psychiatric symptoms they can't explain and seemed to have occurred within a very short amount of time, doctors advise parents to do several things. They say parents should pay close attention to any drastic changes in their child's behavior. They also say parents should be their child's greatest advocate.Trifilletti says parents should always seek multiple opinions from doctors willing to consider a variety of causes for psychiatric behavior and parents shouldn't be told their child simply has a psychological disorder.
Parents seeking help can find local resources in Charlotte through the PANS Research and Advocacy Initiative. The non-profit raises money for research and holds events annually. PRAI also provides education to parents, teachers, and counselors as well. The group can be contacted at www.praikids.org
More resources can also be found through mykidisnotcrazy.com, the website for a film produced to bring awareness to PANDAS and PANS.
Cox Media Group
/cloudfront-us-east-1.images.arcpublishing.com/cmg/LH3JSJEF3VBLRJLJQESEAG34AM.png)
