Frequently Asked Questions
What is PANS & how does it differ from PANDAS?
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.
What are the clinical signs I should look for?
The symptoms can vary greatly. However, the typical symptoms are SUDDEN BEHAVIORAL CHANGE with the behaviors being obsessive-compulsive disorder (OCD), anxiety, anorexia, separation anxiety, school phobia, motor tics and other excessive movements, decline in ability to read/write/draw/calculate, increased tantrums and aggression, and bedwetting. Your child may have one, a few or almost all of these symptoms. In extreme cases, the child may look autistic or “possessed”. The symptoms persist and are not easily otherwise explained. There frequently is a recent identifiable infection, but not always.
Why Dr. Trifiletti?
Having had the privilege of caring for over 5,000 patients with PANDAS/PANS during the past twenty-two years not only from all over the United States, but also across the globe: Canada, England, Ireland, Italy, Austria, Finland, Mexico, Australia & Bangladesh, Dr. Trifiletti is the world’s foremost authority of these conditions. Since he is a sole practitioner, Dr. Trifiletti has personally examined and treated every single patient. 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.
What can I expect at the first consultation with Dr. Trifiletti?
Dr. Trifiletti dedicates about two hours to the initial consultation. During the first hour, Dr. T meets with both parents behind closed door, gathering the child’s full history from conception forward, as well as both parents’ medical history, and finally family tree history. He will also review any prior clinical records. Then Dr. T brings the child in to the room, does a neurological exam, talks with the child and attempts to get him/her to interact. Lastly, Dr. T will do extensive lab tests, and if warranted, genetic testing.
What is the age range of patients you treat?
PANS can occur in children under a year of age and in adults over 21 years of age. However, 7-10 is the usual age of onset. Dr. Trifiletti typically sees patients from three months to 29 years of age, however he is currently accepting a limited amount of adult medical mystery or PANDAS patients on a case by case basis. Interested candidates should please submit their requests via the form on our "Contact" page, or by calling the office.
When can we expect a diagnosis?
If your child is being evaluated for PANDAS/PANS, patients will have a working diagnosis after completing six consecutive months of treatment with a positive response.
When will I receive a treatment plan?
Dr. Trifiletti reviews his clinical findings and treatment plan at your first follow up visit which is ten days after your initial consultation.
How often do you have to see the doctor?
You must come in for the initial consultation and follow up approximately ten days later. Then, visits are once every four months for medication management.
What is the treatment for PANS?
We perform a detailed, time-honored blood-test evaluation to determine the potential triggers for a PANS episode and treat what we find – we do not use a protocol. In many cases, simple non-steroidal anti-inflammatory agents, like ibuprofen, is highly effective in reducing the symptoms of PANS, but often additional antibiotics or antiviral agents are needed. We also do a detailed evaluation of the immune system, as it is our experience that almost children with PANS have something wrong with their immune system, subtle in 90%, but severe in 5-10%. Depending on the details, treatment with intravenous immunoglobulin (IVIG) may be needed. In our practice less than 10% of our patients require IVIG.
Do you treat patients with Autism?
Yes - 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, we have started an AUTISM INITIATIVE in 2020. We perform a fast track medical and genetic evaluation similar to that in the child with PANDAS. Within three months time, we can have a full, multi-disciplinary, evaluation.
My spouse works full-time can I come alone? Do I have to bring my child? Or do both parents have to be present?
Your child must attend the initial consultation along with both parents. PANDAS affects the entire family dynamic, therefore it is mandatory that both parents attend the initial consultation without exceptions. Dr. Trifiletti will meet the parents privately first, so they can speak freely and will not review the clinical history in front of the child.
What is your guest policy?
Pediatric patients (18) and younger must be accompanied by biological parents only. Due to the nature of PANDAS/PANS, we must keep the office as sterile as possible, therefore siblings, caregivers or additional guests are not permitted. We appreciate your understanding. Additionally, pediatric patients should arrive with a laptop and headphones so they may remain in the room. Our staff is not liable for the care or safety of our pediatric patients.
Adult patients (18 and over) should arrive alone. Disabled adult guests under court appointment guardianship may arrive with the patient. We request that all families please adhere to the policy of the practice.
Will your staff watch my child when we are in with Dr Trifiletti?
Unfortunately due to safety and liability issues, our staff is unable to watch your child/children when Dr. T. is speaking to the parents. Please plan to bring a care giver with you to the office. Children can not be left unattended.
I am recently divorced and I don’t want my ex-spouse to know I’m bringing my child in for evaluation. Will Dr. Trifiletti still see my child?
No, as a policy we do not get involved in domestic matters. As stated prior, both parents must attend the initial consultation and follow up and both must be in agreement regarding treatment. We are sorry there will be no exceptions as PANDAS affects the entire family dynamic.
My child is currently under the care of another PANDAS physician, can we still see Dr. Trifiletti?
Yes, however please understand Dr. Trifiletti will provide an initial evaluation only. If you decide you would like your child to continue under his care, you will be expected to leave your prior physician due to the conflict of treatment plan. If you decline then service will be halted.
Will Dr. Trifiletti treat all medical needs and act as a primary physician?
No, Dr. Trifiletti is a specialist, therefore your child will still need a primary/Pediatrician, Psychiatrist, Therapist etc.
Do you accept insurance?
No we do not accept insurance. Dr. Trifiletti devotes up to two hours for the initial consultation/visit and insurance carriers will not reimburse the time needed. We chose to opt out so Dr T. can provide the highest standard of care. We will provide a receipt at the end of your consultation which can be submitted to your insurance carrier, however please keep in mind, this will be applied towards your out of network/out of pocket deductible.
Where does Dr. Trifiletti do the labs?
The initial labs will be done in our office and sent to Quest Diagnostics or LabCorp. Dr Trifiletti only accepts labs processed by LabCorp or Quest. We do not accept labs from hospitals or facilities that send to LabCorp or Quest.
Do you provide vaccine exemption letter?
No, Dr. Trifiletti does not provide vaccination exemption letters.
My child does not want to attend school and I don’t want to force him/her. Will Dr. Trifiletti provide a letter to keep him/her homebound?
All children under Dr. Trifiletti‘s care are expected to attend school and he does not provide letters to keep children homebound. Dr. T feels once you allow children to stay home it creates a pattern of school-refusal, therefore it’s the best interest for all children to attend school full-time. However, Dr. T will provide a request to have your child evaluated by the child study team. The child study team will then provide all services they deem necessary based on their findings.
With genetic testing, do you share the raw data with patients?
No, due to liability, we provide a formal genetic report, but we are unable to share raw genetic data.
