RAMSEY, NJ: Dr. Rosario Trifiletti, MD, Ph.D., a renowned Pediatric Neurologist and the world’s foremost authority of PANDAS/PANS, has had the privilege of caring for over 5,000 patients, not only from all over the United States, but also across the globe: Canada, England, Ireland, Italy, Austria, Finland, Mexico, Australia, and Bangladesh. Specializing in highly complex cases, Dr. Trifiletti (“Dr. T”) has helped countless children who suffered for years while other professionals could not offer a proper diagnosis and simply gave up. For more than two decades, Dr. Trifiletti has been deeply involved in PANDAS/PANS. From 2009-2019 he ran the only practice in the world dedicated exclusively to the condition.
PANS (Pediatric Acute Neuropsychiatric Syndrome) refers to the relatively sudden onset of characteristic behavioral changes in a child. The changes usually involve the appearance of OCD, Anxiety, severe anxiety, tics, aggression, irritability, personality changes, Attention Deficit Hyperactivity Disorder (ADHD), inability to concentrate, deterioration in learning abilities and school performance; developmental and age regression (including deterioration in handwriting), sleep and nighttime difficulties. These changes (“flares”) tend to occur repeatedly in the same child. PANS is usually secondary to an infection, but not necessarily. PANDAS is a small subset of PANS in which each and every flare is associated with a streptococcal infection, specifically with the strep that causes strep throat. PANS can occur in children under a year of age and in adults over 21 years of age. However, 6-10 is the typical age of onset. It is now estimated that 1-2% of children have PANDAS/PANS, and the number may be some tenfold higher in children with autistic spectrum disorder. When affected by these diseases, seemingly normal, healthy kids can change almost overnight.
“Now more than ever, it is crucial to bring awareness to these debilitating diseases. In the era of COVID-19 and quarantines, there has been much focus on children's mental health and the stress that the lifestyle adjustments have caused,” Dr. Trifiletti said. “For children, it means less social interaction with peers, less sports, and online schooling. We are all hoping to "get back to normal" soon, but what if some of these changes are, in fact, the new normal? Some children are especially vulnerable. Whenever we see an acute mental status and behavioral changes, we must consider PANDAS/PANS. The common feature in most cases is the SUDDEN ONSET of symptoms. Parents often use such terms as ‘I lost my child’ or ‘my child has become possessed’, but it is not witchcraft! It is an unusual reaction of the body to inflammation, usually caused by infection. It is truly remarkable to observe an intense psychiatric condition relieved promptly by an antibiotic or an anti-inflammatory agent, thereby sparing children from psychiatric medications.”
When treating patients, Dr. Trifiletti performs a detailed, time-honored blood-test evaluation to determine potential triggers for a PANS episode. Based on the findings, a customized plan is developed per person. Often, a simple non-steroidal anti-inflammatory agent, like Ibuprofen, is highly effective in reducing the symptoms, but often additional antibiotics or antiviral agents are needed. Since the overwhelming majority of patients have problematic immune systems, a detailed evaluation of the immune system is also conducted. Depending on the results, treatment with intravenous immunoglobulin (IVIG) may be needed but is typically required for less than 10% of patients.
After studying patients with PANDAS for many years, it became apparent that the incidence of PANDAS/PANS is particularly high in children with autism. As a result, they started an autism initiative in 2020 where they perform a fast-track medical and genetic evaluation similar to that in the child with PANDAS. Within three months' time, they can offer have a full multi-disciplinary evaluation.
Since he is a sole practitioner, Dr. Trifiletti, personally examines and treats every single patient. “I believe we have the clinical experience, medical and genetic data to truly help children with PANDAS/PANS and autism. I would cherish the opportunity to help your child,” Dr. Trifiletti said. “I remain a Pediatric Neurologist and medical scientist, always using a scientific perspective to evaluate children with PANDAS/PANS and autism. Humility in the face of the extraordinary complexity of the body – there is so much we don’t know scientifically- that it gives us a license to ‘think out of the box’ at all times. In my opinion, this is the best way to establish a firm diagnosis and optimal treatment.”
Prior to opening his clinic, Dr. Trifiletti was the chief of Child Neurology at two major institutions in the NYC metropolitan areas and has had extensive training in Pediatrics, Neurology, Neurogenetics, Metabolic Disease and Mitochondrial Disease, having published in all these areas. In addition to his medical degree from Johns Hopkins University School of Medicine (JHUSM), Dr. Trifiletti has a Ph.D. in Pharmacology and Experimental Therapeutics from JHUSM, having been mentored by the Lasker-award winning (and Nobel-nominated) neuropharmacologist Dr. Solomon H. Snyder and has published over 80 scientific papers.
Dr. Trifiletti’s practice, PANDAS/PANS Institute, is located at 545 Island Road, Suite 1D, Ramsey, NJ. Tel 201.236.3876
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