In spring 2014, our family underwent a massive change. We had no idea what was happening, how it was happening or why it was happening. All we knew was that our beautiful, smiling, playful, energetic and affectionate, loving son had morphed into a child who could not walk out our front door, communicate with us or even eat a simple meal.
It’s one thing to have three physically sick kids, it’s another level to add the stressful neuropsychiatric symptoms of PANDAS/PANS. The financial burden . . . led us to file bankruptcy. For us, the financial burden is times three.
Georgia lacks doctors who understand PANDAS and can treat it. We had to travel to NJ, NC and IL to find PANDAS doctors who confirmed the diagnosis.
In seven years, we spent $280,000 on schools, doctor and psychology visits, medicines, tonsillectomy and IVIG treatments that would have been unnecessary had my son been correctly diagnosed.
In the next year, new and more severe OCD symptoms and tics emerged. An integrative doctor gave a rapid strep test and said it’s not PANDAS. We now know blood work is necessary to show heightened strep titers.
We are trying to beat this dreadful disorder. I figured out that when he is aggressive, loud and out of control, his body is being attacked by a virus causing inflammation in his brain.
Sonja Orlovska, MD; Claus Høstrup Vestergaard, MS; Bodil Hammer Bech, PhD; Merete Nordentoft, DrMed; Mogens Vestergaard, PhD; Michael Eriksen Benros, PhD
JAMA Psychiatry-2017
The findings reported in this research study represent one of the largest retrospective studies conducted to date on the association between streptococcal infections and PANDAS. Children with a previously positive streptococcus test had an 18% higher risk of any mental disorder, 51% higher risk of OCD, and 35% higher risk of tic disorders, which are diagnostic criteria for PANDAS. Study findings support the association of streptococcal and non-streptococcal infections in the diagnosis of pediatric acute-onset neuropsychiatric syndrome.
Wald, Ellen
The Pediatric Infectious Disease Journal-2019
In 2013, a PANS Consensus Conference was convened at Stanford University, and several consensus statements have been published in recent years. The existence of PANDAS has been controversial from the time of its first publication. For those of us familiar with the sequelae of streptococcal disease and the concerns of community physicians faced with the care of children with these neuropsychiatric symptoms, the controversy has proven to be a disservice to both pediatricians and families. It has fostered a dismissive attitude toward important clinical observations.
Conclusions: The interactions between EDs and autoimmune diseases support the previously reported associations. The bidirectional risk pattern observed in women suggests either a shared mechanism or a third mediating variable contributing to the association of these illnesses.
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