A mysterious illness has broken out in LeRoy, New York: at least 16 teenagers are suddenly overcome with severe tics, twitching, and obsessive compulsive behavior. And now about a dozen families across St. Louis say they`ve been through, and in some cases are still going through, the same thing. For the first time ever, they met in a support group Wednesday night.
"I knew something deep down was actually more wrong, but doctors kept saying you just have bad OCD. I was like, `No. There`s something more.`" said Robby Bauer, now a 15 year old freshman at De Smet. "I went through really hard times. All my friends were mean to me. I had anxiety. I wasn`t in school."
Robby is back. For three years, it was like he was gone.
"He wouldn`t go out of the house, wouldn`t leave his room. Even though he`s a big kid, he stopped eating for a while, didn`t sleep. It just turned our family upside down," said Robby`s mother Annie Bauer. "And there were times I thought that it couldn`t get much worse. Once I said that, something else would happen."
Robby`s behavior suddenly changed in sixth grade. "He went from being a happy, good student, athletic, fun-loving, popular. In a couple months, just a completely different kid."
Robby remembers it well. "I had to check every door, every knob and make sure doors were locked, sometimes I couldn`t stop washing my hands. Had to check my homework over and over again to make sure it was done," he recalls.
Annie remembers Robby going days without sleeping, and having awful panic attacks. He didn`t go to school for 6th, 7th, or 8th grades.
Joshua Suthar was younger when his episodes began. He was just six years old. He`s now eight. "I literally remember sitting in my car and he started smacking his lips and clicking his tongue and he said, `I can`t stop doing this.` and I said, `Oh well. You better stop or you`re gonna drive me crazy!`" said Joshua`s mom, Lori. "But he couldn`t stop. It spiraled out of control. Then it went to touching his feet, swinging his arms and legs, to eye rolls, you know progressively worse."
And there was rage. Lori and her husband took turns staying up all night watching over Joshua, who sometimes threatened other family members.
"It was a nightmare. He wouldn`t sleep anymore. He wouldn`t eat," recalled Lori.
Wednesday night, the Suthars and the Bauers met for the very first time, as the first-ever PANDAS support group met in the Suthars` basement. PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. Joshua and Robby have both been diagnosed. Members of nine families were there.
Their doctors believe the children`s sudden neurological disorders stem from a strep infection. The antibodies their immune systems naturally produced to fight the infections mistakenly attacked an important area of their brains. "That area is linked to Tourette syndrome, obsessive compulsive disorder, anxiety, attention deficit disorder," said Lori.
PANDAS is a controversial diagnosis because some in the medical field believe there is no link between strep and these disorders. The families in the support group meeting said they went to doctor after doctor without getting a diagnosis, or answers, or treatment.
"They were just like, `It`s psychiatric,`" said Robby. "But there was something deep down wrong. That`s what a lot of people don`t understand."
Robby and Joshua are improving. Both have received IVIG treatment, which is intravenous immunoglobulin, a plasma replacement therapy.
"I feel great," said Robby. "I`m captain of the football team. I`m doing a lot better."
Lori has written a book called "Joshua`s Missing Peace". She`s hoping sharing these stories helps other children and other families.
"I don`t ever want any other family to go through what we`ve been through," she said. "I want families to know this is a possibility. I`m not saying every strep case is going to end up with PANDAS, we know that. But you know what, the diagnosis changed our life. Joshua has a future now and we didn`t have that before we had help."
Some medical experts have investigated whether PANDAS could be responsible for the teenagers` illnesses in New York. There`s been no definite link made.