Alexia Baier is now eight years old, and her parents told ABC News, finally much better. Their road to treatment with her was long and hard, and included a psychiatric hospitalization for her at age four after she violently physically attacked her mother.
But now, they say, Alexia is thriving thanks to antibiotic therapy, as well as the removal of her tonsils and adenoids. The Baiers decided to use their experience to become PANDAS activists and make a difference for shell-shocked families like theirs and the Barnes. They eventually banded together with other PANDAS families in their state to pressure Illinois to become the first and only state so far requiring insurance companies to financially support PANDAS treatment. The law was passed and signed into law in Illinois in July 2017.
Brian Barnes has begun his own sort of advocacy as well, spreading PANDAS awareness. In his essay, he describes the upheaval PANDAS brings upon families, asks only that we listen to his family’s story.
“Our story is not unique, but frighteningly common. When children begin demonstrating the rapid dysfunctional symptoms of PANDAS/PANS, the kids suffer terribly and as a result the parents are driven insane trying to battle the onslaught of symptoms. To say that it’s maddening would be a huge understatement.
We are here. Our kids are here. We need help and it can be a lonely battle. The worst part is that there may be a one in 200 chance that it will happen to your child or a child you know.
Listen.”
