What is PANDAS or PANS? with Dr. Rosario Trifiletti
PANDAS or PANS is an acronym that stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. In 2010, PANDAS became PANS, which is the current proper term for it, so you may hear both. The onset of PANS symptoms come often after a Streptococcal infection, also called Strep. After Strep. they may get tonsillitis. The onset can also be seen after an insult to the immune system that may trigger inflammation. It is known to become apparent after the H1N1 influenza vaccination which increases its likelihood. Genetically, those with mitochondrial deficiency are also more susceptible. Also look for excessive fatigue. They may even have mononucleosis (mono). Other infections that are known to trigger PANS can be Lyme disease, and Epstein Barr virus, which is what causes mononucleosis. We commonly may see mycoplasma infections such as a sore throat, or a respiratory infection. To add to the uncertainties, there may not always be symptoms of infections prior to the noting of the onset of the symptoms of PANS. Parents may notice a sudden onset of symptoms such as obsessive compulsive disorder (OCD), or tiks. Tiks can be motor tiks where their body jerks rapidly, (not wiggling), or vocal tiks. Additional symptoms include separation anxiety, a decline in school such as in their reading and math abilities, simplified language, baby talk, bed wetting, and increased urination, aggression, and anxiety with stress. Only about on to two percent of children get PANS, but the percentage seems to be increasing. PANS predisposes one to the symptoms of autism. Autism being a co diagnosis. Instead of a fever their brain will be effected, and thus, their psychology. PANS effects the immune system which is commonly weak in those with autism, so they are a higher percentage. The onset of PANS is most common among children between the ages of three and eleven. It is noticed more around the age of seven or eight years old because of violent stimming. From ages three to five there may just be hyperactivity. Under the age of three it mimics the symptoms of autism. Testing for PANS Testing in either the early or late phase of PANS is best known through the Cunningham Test from Molecular Labs. This test identifies the antibodies associated with this disorder. Blood tests identify the illness and looks for triggers. Genetic testing is also helpful. Noted testing is done through CRISPR/Cas9, 23andme.com, MECP2. and Dr. Amy Yasko. Treatment for PANS Boosting the immune system and treating infections with the right diet that also reduces inflammation is essential, (see free workshop for more on diet). The goal is to keep the child stable. When going in for any vaccination ibuprofen and high doses of vitamin C can be used before and after to alter the fever response pathways. In late phase, it becomes and autoimmune issue which requires stronger treatment for it. Camels’ milk has been known to be helpful in treating the immune responses associated with PANS and Lyme also. PANS Resources Karen’s live radio show interview with PANS expert, Dr. Rosario Trifiletti, show # 27. PANS specialist, Dr. Rosario Trifiletti’s website, PandasInstitute.org Karen’s live radio show interview with Dr. Jodie Dashore on the co-morbid symptoms of autism including PANS triggered by mold, show #30 PANDASnetwork.org (a support website for parents) National Institute for Mental Health Click Here for more details.