It is estimated 1 in 200 children will develop PANS PANDAS. Some evidence suggests that PANS PANDAS could account for as many as 1 in 10 new pediatric cases of OCD each year. However, the exact numbers are not certain as the majority of PANS PANDAS cases go undiagnosed. There is clinical urgency to learn about PANS PANDAS to help close the gap between the onset of symptoms and the start of appropriate treatment to reduce suffering and achieve remission.
Currently, it is estimated that parents will see an average of 8 doctors and spend three years seeking a correct diagnosis due to the present lack of awareness and understanding. If left untreated, the possible permanent neurological damage, years of developmental disruption, and the life-long struggle for a patient cannot be ignored. In addition, there are adults with PANS PANDAS who either have symptoms still lingering into adulthood or experience adult-onset. There is no age restriction for a PANS diagnosis. Resources and providers are even more limited for them. The collateral damage to the patient whose symptoms are not treated, leading to unremitting symptoms, is utter heartbreak and devastation to patients and families.
Collected evidence shows that a missed PANS PANDAS diagnosis has resulted in many patients being placed on unnecessary psychiatric medications or in more restrictive, costly psychiatric facilities, possibly causing more harm than healing. Tragically, multiple patients have become so overcome by the suffering that they turned to suicide. For a treatable infection to accelerate to this tragic outcome should be alarming to us all.
- PANS/PANDAS is treatable. Early identification and appropriate treatment improve the odds of a successful outcome. Research suggests that early and aggressive treatment of the inciting infection with antibiotics decreases the likelihood of residual symptoms and recurrence.
- Parents currently see an average of 8 doctors and spend three years seeking a correct diagnosis due to a lack of awareness and education.
- If left untreated, possible permanent neurological damage, years of developmental disruption, life-long struggle to the patient, and devastation to their families cannot be ignored. Thus early identification is paramount.
- Missed PANS/PANDAS diagnoses have resulted in patients being placed on unnecessary psychiatric medications or in more restrictive costly psychiatric facilities, causing more harm than healing. According to the NIMH, a timely diagnosis and appropriate treatment may prevent as much as 25% of all pediatric mental illnesses.
- Multiple deaths of PANS/PANDAS patients have resulted in death by suicide, for a treatable infection to accelerate to this tragic outcome is alarming.