Understanding PANS/PANDAS

A controversial disorder that is affecting thousands of children and families.
Shutterstock 1027260940
The peak ages are 7-12 for children with PANS/PANDAS, but the disorder is treatable and recovery is possible.

PANS and PANDAS is a medical diagnosis that affects thousands of children throughout the country, however, the symptoms of PANS and PANDAS are easily masked as other disorders, including anxiety disorder, obsessive compulsive disorder and tics. What separates PANS/PANDAS from the others is its acute onset after a child has an infection, including but not limited to strep.

Dr. Susan Swedo and her colleagues at the National Institute of Mental Health first coined the term PANDAS, which stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal, in the late 1990s to describe a subset of children who presented with tics and/or OCD within hours or days of a group A streptococcal (GAS) infection, the bacteria that causes strep throat. 

According to the pandasnetwork.org: PANDAS/PANS symptoms may have flared in a lesser manner for weeks or years prior to the acute onset but often readily disappeared or lessened over time. If untreated with antibiotics generally a myriad of other symptoms intensify in the weeks and months post-acute onset. If the severe symptoms do not stop and persist over many months, permanent cognitive damage can occur.

The theory behind what causes PANDAS/PANS is that a bacterial infection triggers the immune system to produce antibodies to fight the infection, however, instead of attacking the infection, the antibodies attack the basal ganglia, the part of the brain that controls emotions, behaviors and physical movements. 

Dr. Rosario Trifiletti is a neurologist who opened the PANDAS/PANS Institute in Ramsey, New Jersey in 2009. He has personally treated more than 5,000 patients with PANDAS/PANS since becoming dedicated to helping children with this condition. 

Dr. Trifiletti is speaking in Charlotte Oct. 27 following the second annual PRAI 500K at Marvin Ridge High School, hosted by PRAI's (Pediatric Research Advocacy Institute) North Carolina chapter, an organization dedicated to raising awareness and research for neuroimmune disorders like PANDAS/PANS. In anticipation of the walk and his discussion, we spoke with Dr. Trifiletti to learn more about PANDAS/PANS. 

MH: For those who don't know, what is PANDAS and PANS?

RT: PANDAS is an acronym for Pediatric Autoimmune Neuropsychiatric Disorders associated with Streptococcal infection. PANS is Pediatric Acute Neuropsychiatric Syndrome. PANS is the proper term for this condition. PANDAS is a legacy term, but many doctors know it by that term, so it remains in the medical and lay literature. Following a two-day conference in 2012, the concept of PANS was born. The symptoms were refined, the obligate streptococcal trigger removed and the autoimmune requirements lessened. This was a critical event in the history of this condition.

PANS refers to the sudden onset of either OCD and/or anxiety in conjunction with one or more other symptoms. These other symptoms could include motor or vocal tics, cognitive changes, behavioral regression, excessive need to urinate, violent tantrums, anorexia, hallucinations or an autistic-like regression. Many parents state that they have "lost their child."

Some physicians, myself included, view PANS as the most important medical cause of severe psychiatric symptoms in children. Perhaps 1 to 2 percent of children have PANS. All sorts of bacteria or viruses can cause PANS. There can be a half dozen culprits [that cause PANDAS/PANS], including strep, mycoplasma, Coxsackie B virus, HHV6 virus, Epstein-Barr virus and lyme disease. Almost all children with PANS have dysfunction with their immune system.

To give an idea of the scope of the problem in Charlotte, the rapidly-growing Charlotte Metro area has approximately 2.5 million residents, of whom approximately 24 percent are under the age of 20. We would therefore estimate approximately 5,000 to 10,000 children in the Charlotte Metro area have PANS. In contrast only a half dozen doctors in North Carolina treat this condition, far less than the number of traditional child psychiatrists and child neurologists.

My view on things is PANS is an alternative fever response and a fundamental way certain kids' brains respond to fevers. It’s not like any other disease. More like febril seizures, but it is something that is super imposed on your genetics.

MH: I understand not all doctors or pediatricians are familiar with PANDAS. Why is that? 

RT: Many doctors either do not know about and/or do not recognize and therefore do not diagnose or treat PANS. The reasons for this are complex. If the estimate above is even just 10 percent of the true number, there is a marked need for physician awareness of PANS.

Research progress in PANS, which is in its infancy, must be sufficiently persuasive that major institutions will get on board. Until then, PANS may be viewed as “pseudoscientific.” It is most definitely a real medical condition, causing suffering to thousands of children and their families. It is usually very treatable, but not by traditional psychiatric medications.

Awareness of PANS among parents and physicians needs to increase. Increased awareness will spare thousands of children in the Charlotte area — and hundreds of thousands of children nationwide, needless exposure to powerful psychiatric medications and in some cases psychiatric hospitalization.

MH: What are the signs and/or symptoms of PANS? And when should a parent seek a diagnosis?

RT: Parents and physicians should suspect PANS when there is any sudden, unexplained behavioral change in a child persisting for more than a week, particularly when it involves the symptoms noted above. The peak age for this condition is 7-12 years with a sharp peak between ages 8-10. I believe that the symptoms in toddlers may be a little different, chiefly extreme hyperactivity or even apparent autistic regression. 

In my opinion, any child with a new diagnosis of an autistic spectrum disorder should also be evaluated for PANS — that is a large and growing number of children throughout this country.

MH: How do you initially treat PANS?

RT: Initial approach is to treat like a fever and infection using ibuprofen and antibiotics along with lab tests that screen for infections. [Note: Type of antibiotic prescribed is based on lab work done by doctor to determine type of infection. An low-dose antibiotic may be prescribed for a month or more].

MH: We have the PRAI for 500K walk in Charlotte on Oct. 27 to raise money for research into PANDAS/PANS. What sort of research being done for this disease? 

RT: PANS research is still in its infancy. Research thus far needs to proceed in several different areas:

  1. Clinical research – both clinical features and associated laboratory findings
  2. Animal model development
  3. Immunological underpinning of PANS.
  4. Genetics, including clarification of relationship of PANS to autism.

I have amassed a database of carefully  evaluated patients with extensive laboratory and deep, whole-exome level genetic data. These databases need to be mined and will provide an enormous amount of information about this disease, and will form a basis of further research hypothesizes.

I have recently started a non-profit organization, the Bamboo Institute for PANDAS/PANS research, to oversee these research studies. I hope PRAI (Pediatric Research and Advocacy Institute) and other organizations will support this research mission. One of our concrete goals for 2019 is starting a scientific journal devoted to research in PANS, which will be open-source.

Join the PRAI 500K on Oct. 27 at Marvin Ridge High School in Waxhaw. In addition to the walk, there will be a costume parade, and pumpkin and face painting. Want to learn more about PANS/PANDAS? Tickets are available to hear Dr. Trifiletti speak at Hope Community Church on Rea Road, Oct. 27 at 2 p.m.

Michele Huggins is the editor of Charlotte Parent magazine.