Roberts Family
Atlanta has some of the best pediatric hospitals in the country, yet they do not recognize this disorder (PANS/PANDAS) nor does insurance provide coverage.
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Roberts Family
I started searching for PANDAS specialists, only to find there were 3 in the state of Georgia and 2 of them were not taking new patients. Only 1 was taking new patients, but they did not accept insurance.
Roberts Family
Unfamiliar with PANDAS… I had no idea there was a possible connection between his strep and his OCD symptoms. Upon our return, we finished up his antibiotic and within days he was exhibiting his OCD behaviors again.
Roberts Family
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.
Ward Family
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.
Drury Family
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.
Drury Family
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.
Drury Family
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.
Sanders Family
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.
A Pediatric Infectious Disease Perspective on Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infection and 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.
The Ward Family
The Happiest Place on Earth
They say that when your child has PANS/PANDAS that you often remember the exact moment something changed. For our oldest son, Neely, that “moment of change” happened in front of...
The Sanders Family
As I sit pondering where to begin, I realize just how difficult it is to actually write about my son’s struggle with the horrible disorder called Pediatric Autoimmune Neuropsychiatric Syndrome...