LEROY, NY -- Another student is now dealing with that strange illness in LeRoy. Now the National Institutes of Health is planning to get involved and help search for answers. This comes at a time when the parents of the sick students are losing confidence in local doctors and plan to work with a new specialist.
It's what no family from LeRoy High School wants to hear: According to Dr. Laszlo Mechtler of the Dent Neurologic Institute, over the weekend he saw a new student with those Tourette-like symptoms. He wouldn't say if the student was a boy or a girl. He would only say the diagnosis remains "consistent."
Meantime, many of the parents of the other teens are having trouble accepting the diagnosis of Conversion Disorder or Mass Psychogenic Illness.
Dr. Mechtler says the National Institutes of Health has reached out to Dent to do additional high end testing on the girls. He says the tests will include functional MRI, DTI, and MRS at no cost to them. Of the 10 original patients seen at Dent, Dr. Mechtler says only 5 or 6 have come back and agreed to participate.
The NIH tests will happen this Sunday. It just so happens, that's the same day the parents are bringing in a new, private doctor for a second opinion. That doctor is Rosario Trifilett, a pediatric neurologist from Rockland County. He's a specialist in an autoimmune disease called PANDAS, or Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. The term is used to describe a subset of children who have Obsessive Compulsive Disorder (OCD) and/or tic disorders such as Tourette's Syndrome, and in whom symptoms worsen following strep. infections such as "Strep throat" and Scarlet Fever.
Instead of strep, Dr. Trifiletti says mycoplasma, or walking pneumonia, may be causing it. "We happen to be in an epidemic [of mycloplasma]. A lot of the times the kids won't have symptoms of walking pneumonia. Some of them may, but will get this instead," Dr. Trifiletti said by phone.
But Dr. Mechtler told 2 On Your Side's Melissa Holmes by phone that he stands by his diagnosis of Conversion Disorder. He said he ruled out PANDAS because it's an exceedingly rare disease that occurs before the age of 11, although he says there are some exceptions. He says only one of the girls had a throat infection, but he will remain open-minded.
As for that diagnosis of conversion disorder, Dr. Trifiletti says he stands with many of the parents. "Honest opinion?" He asked. "It's absolute garbage. I don't believe it one bit."
He may call the conversion disorder diagnosis garbage, but Dr. Trifiletti has never met with the patients or gotten their history or reviewed their labs. He plans to do that when he comes to town Sunday. He says he'll do additional testing free of charge. He says if they do turn out to have Pandas from a form of walking pneumonia, it can simply be treated with an antibiotic like Z-Pack.
Between the incoming help from the Feds and the private neurologist, the families hope their concerns may finally be put to rest. "We just want to get our kids better and stop other kids from getting sick," said parent Jim Dupont, Jr.