The Georgia State Senate, on February 22, 2019, passed Senate Resolution #233 recognizing October 9, 2019 as PANDAS Awareness Day at the Georgia State Capitol. The resolution states that “it is imperative that there be greater public awareness of this serious health issue among parents, policymakers, and medical providers in Georgia.”

  PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome. PANDAS is a subset of PANS and stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections.

  According to the Alliance to Solve PANS & Immune-Related Encephalopathies, or ASPIRE, PANS/PANDAS “are misdirected immune responses that result in acute onset of OCD, tics and/or restricted food intake, along with other neuropsychiatric and somatic symptoms.”

  PEDS/PANDAS symptoms include Anorexia and or Avoidant Restrictive Food Intake Disorder (AFID), obsessions, compulsions and/or intrusive thoughts, motor and/or verbal tics, choreiform movements, generalized anxiety, tantrums, among many other symptoms. The symptoms have the ability to relapse and remit and do vary from person to person. Symptoms are or can be triggered by infections, inflammatory reactions, or metabolic disturbances.

  The National Institute of Mental Health (NIMH) estimates that one in 200 children have PANS or PANDAS to some degree. In Georgia, around 15,000 children are affected by PANS or PANDAS.

  Medical jargon aside, Henry County resident Katey Bacot knows the personal impact of PANDAS/Celiac disease on one’s life, as her son, Madden, has both.

  Madden was born a healthy baby boy, but, at a few months old, Madden began developing issues in the form of Respiratory Syncytial Virus (RSV), ear infections, the common cold, strep, and upper respiratory infections, among many other things. These illnesses would appear and disappear, much like other children with sickness at a young age.

  Over time, however, along with these illnesses, he began to develop OCD in the form of being preoccupied with the day’s weather, physical tics in the form of fast blinking, anger and aggression, separation anxiety, hypersensitivity to smells, noises and textures, and pain in his limbs. Again, these symptoms would appear and disappear over time.

  “My sweet boy … was screaming all the time, talking about death/dying, hitting people, kicking people and hitting and kicking furniture, walls and anything he came in contact with, said Katey.

  “He was on edge all the time, like a short fuse ready to explode.”

  Katey took Madden to the doctor and had his blood checked, received a  plan with diet restrictions, supplements and therapies. Madden showed an 80 percent improvement for about six months, but then the symptoms flared up once again.

  Back at the doctor, Madden finally received a test for PANDAS.

  “When we did the blood labs and when we got the results, we were shocked at how high his markers were,” said Katey. “He had Strep, Mycoplasma bacteria and Epstein Barr Virus.”

  The bacteria in his body was affecting his lifestyle. After antibiotics and a new supplement regimen that was better suited to fighting the effects of PANDAS, Madden began to improve and did well for a few years.

  “Things are constantly like a roller coaster, up and down,” said Katey. “We will have a stable few weeks and then the bottom comes out from under us.”

  New symptoms and tics show up every so often, but Katey remains positive that Madden will continue to make improvements.

  “Everyday I see a little bit of the old Madden shine through and I know that he is fighting to get better as well,” said Katey. “Right now, Madden is fairly stable, so life is a little more calm,” said Katey. “He is in soccer and public school.”

  Katey describes her son’s experience with PANDAS as a journey, but one she wishes could have been discovered sooner.

  “For us, it took a year and a half for diagnosis because doctors did not understand PANDAS or know it existed,” said Katey. “It was a nightmare for us during that time. Madden got kicked out of two daycares and he could not attend public school.”

  “As a mom, it was heart wrenching,” said Katey. “A longer delay of treatment is hard. That is why awareness is so important.”

  For more information on PEDS/PANDAS, visit www.sepans.org/ or https://aspire.care/.