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"Saving Sammies and Samanthas": An Afternoon of Hope and Exchange of Information About PANDAS




LIVINGSTON, NJ - A group of doctors, patients, parents, and others gathered in Livingston to unravel some of the mysteries of PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections), at a book signing and informational session this past weekend. The "Saving Sammies and Samanthas" event, held at Livingston Town Center on Saturday, April 3, featured Beth Maloney, the author of Saving Sammy: Curing the Boy Who Caught OCD, and Dr. Rosario Trifiletti, MD and PhD, a child neurologist and PANDAS expert. Livingston Town Center, Eastman Management, and LMR Eldercare sponsored the event. Dr. Allison Levine, a family chiropractor from Livingston, was also on hand with information. She has further helped PANDAS patients to relieve health complications through chiropractics.


The afternoon kicked off with a book signing, reading, and question and answer session led by Maloney about her book, based on the experiences of her son Sammy’s struggles with PANDAS. "He’s totally great, finishing up his freshman year at Carnegie Mellon, with an internship this summer at Cisco Systems," Maloney remarked.


The turnaround for Sammy was unexpected; he was expected to be permanently institutionalized for his OCD and Tourette Syndrome. His OCD and Tourette Syndrome, as it turned out, was caused by a strep infection. Maloney compared some of Sammy’s behaviors to the story of Howard Hughes as reenacted in the movie The Aviator. She said like Hughes, Sammy would not walk into certain rooms, would stare at the TV, and would compartmentalize his OCD and Tourette Syndrome to compete in math meets as Hughes did with his internal struggles to attend his senate hearings.

Sammy would be successful and then fall apart after his appearance, needing a week or more to recover. But that all changed when Dr. Catherine Nicolaides, a Marlton, NJ pediatrician, began treating Sammy. Nicolaides assured Maloney that Sammy’s symptoms would disappear, and with a high dose of the antibiotic Augmentin, his OCD and Tourette Syndrome diminished. After a four-year course, Sammy was weaned off the antibiotics entirely. Today, he keeps an Augmentin prescription on hand, in case he feels the onset of symptoms return.

While most of his peers at school contend with sore throats, Sammy is asymptomatic for the usual symptoms, but his behavior changes. Since he has been in college, he has not had to deal with any bouts of strep.


Dr. Rosario Trifiletti chronicled for the audience the history of PANDAS’ discovery. Dr. Susan Swedo of the National Institute of Mental Health (NIMH) looked at the issue in the 1990’s, when she found the connection between OCD and tic patients who had rheumatic heart. Rheumatic heart is a complication resulting from strep. Swedo’s discovery led to her investigation into PANDAS. "Everything we know about PANDAS is over a period of less than 20 years," said Trifiletti. "There’s a lot more we have to learn."


Trifiletti said a certain strict set of criteria is necessary to isolate PANDAS, when a strep infection precipitates the sudden onset of tics and OCD. Trifiletti and other professionals and even parents in attendance said other factors are now being explored which may cause PANDAS. Mycoplasma Pneumonia, Lyme Disease, Toxiplasmosis and even Autism are now being considered as additional possible catalysts.

One parent said her son had high strep titers (a measurement of antibodies produced after a strep infection), and a fungal infection under his thumbnail. After a tonsillectomy, the strep titers dropped and the fungal infection disappeared. Her child’s doctor told her not to ignore the fungal infection as having had a correlation to the elevated strep titers and behaviors associated with PANDAS.


Some doctors are skeptical about PANDAS and believe it is simply coincidence. Some parents discussed their frustration with doctors who will not address their concerns about PANDAS. "It’s a paradigm shift, it’s a tricky idea and some don’t want to take a chance," said Trifiletti. Maloney said parents should simply seek the advice of another physician.


A recent study at Columbia University has brought a glimmer of hope for parents watching their children deal with PANDAS, hope that doctors in disbelief of the disorder’s existence will take note of the study. Mice were injected with strep bacteria and developed the antibodies, which triggered on onset of OCD and Tourette Syndrome tics in the mice.


Critics have discounted the PANDAS possibility, writing it off as environmental factors, including parenting skills, causing the behavioral issues. Experts in PANDAS including Trifiletti indicate these types of factors are eliminated when dealing with lab mice. Dr. Sandra Gold, a neurologist who attended the event, said, "Doctors have to listen to patients and put them first. PANDAS leaves people incapacitated and a simple strep test might lead in assisting the patient."

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