Parents and Caregivers of children and adolescents diagnosed with Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep (PANDAS)/Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) are all too often faced with the burden of risking making the wrong decisions for these children when the only options available are wrong decisions during a crisis. 

PANDAS/PANS are post-infectious autoimmune encephalopathydisorders where the immune system attacks the brain and creates rapid-onset symptoms of OCD, anxiety, depression, Movement and vocal tics, dysgraphia, separation anxiety, sensory sensitivity, dyscalculia, sleep issues, incontinence, rage, self-harm, hallucinations, anorexia, and other severely debilitating psychiatric and psychological symptoms due to inflammation of the brain. These are called “flares” and they are a caregivers and victims worst nightmare. 

Aside from the nearly impossible challenge of actually finding a physician who will diagnose and treat this awful disease, we are faced with the greatest of uncertainty during a crisis situation, for example, our child in danger of themselves or others. 

Currently, in the State of Texas, our only options to seek immediate care during these times of crisis are Emergency Rooms and Behavioral Health facilities, neither or which can accommodate the needs of these children. 

Emergency rooms are extremely bright and noisy, with beds that are incredibly uncomfortable which sets the sensory issues into overdrive. They are also incapable of hospitalizing for what “looks” like a mental health crisis and often refer these children to behavioral facilities. 

Behavioral facilities lack the expertise and treatment to manage the root cause of these symptoms, the autoimmune response to whatever the trigger may be, and will typically only treat with psychiatric medications and talk therapy, neither of which are helpful unless the root cause is addressed and treated. 

Because these are our only options, choosing these paths will not only result in ineffective and unnecessary treatments, it also DELAYS the treatment the patient desperately needs. 

Studies show that 1 in 200 children have PANDAS/PANS, many of which are wildly being missed by the medical community. 

We are parents and caregivers are desperate for a safe facility to take our children when they are in danger. We can’t wait any longer for the medical community to catch up to 30 years of science. Our children are dying, families are being torn apart, parents are losing custody of their children because they refuse these unnecessary treatments for diagnoses their child does not have when the only choice they had was to seek the only resources available. 

Please help us by signing this petition and sharing to any and every social media platform you can. We’re desperate for immunology, rheumatology, psychiatry, psychology, neurology, and general care to come together for once and save our children. Help us give them back the childhood that has been stolen from them.