Dr. Rosario Trifiletti
What is PANDAS/PANS?
PANS (Pediatric Acute Neuropsychiatric Syndrome) refers to the relatively sudden onset of characteristic behavioral changes in a child. The changes usually involve appearance of OCD, Anxiety, and sometimes other symptoms as well. 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.
Why Dr. Trifiletti?
Having had the privilege of caring for over 5,000 patients with PANDAS/PANS not only from all over the United States, but also across the globe: Canada, England, Ireland, Italy, Austria, Finland, Mexico, Australia & Bangladesh, Dr. Rosario Trifiletti, is the world’s foremost authority of this condition. For more than two decades, Dr. Trifiletti ("Dr. T") has been deeply involved in PANDAS/PANS. In fact, from 2009-2019 he ran the only practice in the world dedicated exclusively to that condition.
Since he is a sole practitioner, Dr. Trifiletti, has personally examined and treated every single patient. Specializing in highly complex cases, he has helped countless children who suffered for years while other professionals could not offer a proper diagnosis and simply gave up. Most importantly, because Dr. T is NOT affiliated with any hospital or hospital system, he is afforded total freedom to“think outside the box”, which is critical to analyzing complex cases.
Dr. T has superior clinical training, having been the chief of Child Neurology at two major institutions in the NYC metropolitan areas, and has extensive training in Pediatrics, Neurology, Neurogenetics, Metabolic Disease and Mitochondrial Disease, having published in all these areas. In additional 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.
It is estimated that perhaps one in thirty children born today in the United States will be diagnosed with an autistic spectrum disorder (ASD). There is no question in Dr. Trifiletti’s mind that autism is among the most important childhood diseases, and more must be done to more efficiently diagnose and treat it earlier. Unfortunately, once parents suspect their child might have autism, there are two factors that delay the diagnosis and proper treatment. One, sadly, is often the pediatrician. There can be a “wait and see” approach for referral to a developmental specialist who often renders the “official diagnosis.” Secondly, the backlog in seeing that specialist can be many months. It is not uncommon for a child suspected to have autism to wait 12-24 months for an “official” diagnosis and resumption of therapy. This is, in Dr. T's opinion, too long.
Therefore, we are starting the EARLY AUTISM INITIATIVE. The goal is to accurately assess the possibility of autism as early as possible. We are confident that within 3 months and for very reasonable cost a diagnosis of autism can be established or refuted AND its likely cause can be found. PANDAS/PANS, if found, can be treated and expedited referral to developmental specialists for standardized diagnosis established in a timely fashion.
THE RESULT – a much more time and cost-effective way to begin the most scientifically-reasonable treatment program for a given child.
Complex Cases & Importance of Genetic Testing
Complicated diseases such as Autism and Chronic Fatigue Syndrome usually have many genetic causes, i.e. there are many different genes that cause Autism. Although the symptoms of two people with Autism and Chronic Fatigue Syndrome may appear similar to the lay person, there are in fact different basic underlying causes. A "one-size fits all" protocol is not the best we can do in 2020! If the "one-size fits all" doesn't work, doctors or parents often try a long list of supplements and treatments empirically ("hit or miss") - often with no real benefit and at very high costs. Cutting edge technologies available in only the last few years allow us to use deep genetics ("whole exome sequencing") to make a precision diagnosis as to the genetic factors underlying a disease.
Additionally and equally as important, the cost of such testing has dropped exponentially, making it a realistic option for more people. When you decide to do a deep genetic test on yourself or your child, most often the problem is the results of such a test involve looking at hundreds of thousand of disease candidates. Doctors, including medical geneticists, generally do not have the skills (or time) to find the most likely gene variants causing a disease. This is where Dr. Trifiletti comes in. He has spent the last five years developing a new subfield called "Clinical Gene Finding", proprietary technologies needed to analyze this data. He can provide an analysis that is not available anywhere else and therefore more likely to provide ANSWERS for you that others cannot.
Complex Cases We DIAGNOSE and Treat
3. Multi-system diseases (involving two or more body systems)
4. Unexplained changes in mental status
5. Vaccine reactions
6. Lyme Disease and related conditions
8. Developmental delay, especially progressive, i.e. declining skills
10. Chronic fatigue syndrome and “fibromyalgia”
11. Any condition which doctors have otherwise deemed “hysterical”, i.e. "in your head”
12. Chronic headache and other chronic pain