Welcome! This blog is the story of my journey to understand and treat my PANDAS diagnosis as an adult. Does PANDAS explain all of my health concerns? Have I had PANDAS (with relapse and remitting episodes) since early childhood? I have many questions to explore! My journey is concurrent with my two of my children’s diagnosis and treatment for PANDAS. I am not a doctor. I am not qualified to give any advice. But I am a patient, parent and unrelenting advocate for a disease that is much more common than most people realize.
WHAT IS PANDAS (or PANS)?
PANDAS (or PANS*) is autoimmune encephalitis. An autoimmune disease, in general, means that the body attacks its own healthy tissues. “Why?” is the million (or billion) dollar question. PANDAS is particularly brutal because the BRAIN is the organ affected by the autoimmune response. Because the symptoms of PANDAS resemble a host of other psychiatric, neurological or developmental conditions (like OCD, ADHD, anxiety, depression, learning disabilities, anorexia, and seizure disorders to name a few), a proper diagnosis is difficult to achieve. Most individuals who are eventually treated for PANDAS are misdiagnosed at first. How many people are treated for a variety of mental illnesses or neurological conditions when they, in fact, have PANDAS? The question both haunts and motivates the community of researchers and practitioners involved identifying and treating the disease.
The good news is that underlying causes of PANDAS have been identified: infections! PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) is, as the name offers, caused by strep. PANS* is the sibling of PANDAS: the difference is that other infections, including Lyme, Microplasma Pneumonia (“Walking Pneumonia”), Epstein-Barr Virus (“Mono”) and a few others have been identified as the infectious antagonists.
One very important feature of PANDAS is that the onset of symptoms (like OCD or difficulty writing) develop seemingly “overnight” and usually within a few days of suffering from some sort of illness. Not all parents realize that their child may have had a serious illness or an illness with serious outcomes. Many parents may not connect the strange behaviors to a recent sickness.
The painful reality is that PANDAS is a brutal, terrible disease. Patients are befuddled by their own, strange and unexplained behaviors that make life very difficult for themselves and those around them. Families are torn by competing needs: keeping the patient safe, helping the patient find help and recover, and all the while, maintaining their own sanity in the face of unimaginable stress.
The great news about PANDAS is that it is highly treatable. A small, but growing army of medical practitioners are committed to providing care and hope to patients and families suffering with PANDAS. All the while, advocacy for PANDAS remains a significant need. Please consider becoming PANDAS aware by reading this blog and seeking out other excellent resources about the disease.
*** PLEASE check out http://www.pandasnetwork.org for the best information on research, diagnosis and treatment. Doctors and clinicians who treat PANDAS are listed by regions.