Imagine going to bed feeling completely fine one day, then waking up the next with severe mental illness. Everything around you terrifies you. You experience uncomfortable and uncontrollable bodily sensations and can’t control your body’s movements and tics. Sounds are too loud, lights are too bright - so you hide in your dark room, the only place you feel safe. You don’t want to eat - you’re terrified the food isn’t safe and will make you vomit. Yesterday, you were the kindest, calmest person in the world - now you are filled with rage and everything and everyone annoys you. Your head is full of terrifying intrusive thoughts which won’t go away no matter how hard you try to make them. You basically went to bed as one person and woke up as someone you don’t know, someone tortured by a debilitating condition you don’t understand. Sounds like living hell doesn’t it? It is. But it’s also reality for millions of people with PANDAS/PANS.
Of course I am not talking about the adorable, lazy black and white bamboo eating bears. Or cookware. Most people have no idea what PANDAS and PANS are - even those who have it, go undiagnosed and never receive treatment. They suffer years of misdiagnosis, psychiatric hospitals, therapy, antipsychotic medication, and unfathomable agony. When my daughter was diagnosed with OCD in 2016 I didn’t know how to help her. But over the past six years I have learned a lot about the disorder and knew I wanted to be a resource to other parents - so I started writing about it. Now that she has been diagnosed with PANS, I want people to know about PANDAS/PANS too. With diagnosis and proper treatment, these conditions are manageable if not completely curable. There is hope. But if you don’t know to look for them you will never find them.
PANDAS is the acronym for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus. If there ever was a disorder needing an acronym it is PANDAS. It is an autoimmune disease triggered by a strep infection. Initially, it was argued that onset of the disease had to be ‘sudden’ - literally from one day to the next as described above. But that isn’t always the case. In my daughter’s case she was most likely exposed to the bacteria years ago, and developed the disorder gradually until her immune defense became so overwhelmed it could no longer fight the infection. The strep bacteria is infamous for tricking the immune system into attacking parts of the body instead of the strep infection. Commonly known illnesses derived from strep are Rheumatic Fever where the heart is targeted or Glomerulonephritis where the immune system attacks the kidneys. In the case of PANDAS the brain’s dopamine receptors, especially in a part called the Basal Ganglia are attacked resulting in a myriad of mental illness but predominantly OCD. Ironically, PANDAS/PANS are physical illnesses - but both manifest with horrible neurological and psychiatric symptoms, and therefore often are misdiagnosed as severe mental illness.
PANS (Pediatric Autoimmune Neuropsychiatric Syndrome) is a newer term used to describe the same mechanism, but it can be triggered by environmental factors such as mold, Lyme and other bacteria.
Now beware! Don’t let ‘Pediatric’ fool you into believing that you can’t acquire PANDAS as an adult. You absolutely can. If anything, you don’t develop OCD at 32 years old. You’re not all of a sudden Bipolar at 56. If you get these disorders as an adult, I would suspect the underlying cause to be linked to autoimmune disease. But hey, I’m no doctor... just a mom.
Some of the most common symptoms of PANDAS/PANS are:
• Obsessive Compulsive Disorder
• Tics
• Restrictive eating
• Anxiety
• Depression
• Body Dysmorphia
• Anorexia Nervosa
• Sensory sensitivities
• Sleep difficulties (insomnia, hypersomnia, etc.)
• Choreiform Movements
• Emotional Lability
• Urinary problems including bedwetting and/or frequent urination
• Hallucinations
• Aggression and Irritability
• Deterioration in Handwriting
Not every person has all of these symptoms, and the list above is not conclusive. But it’s not uncommon to have many of the above at once.
Treatment isn’t antidepressants and antipsychotics. These medications may be needed to relieve the symptoms of PANDAS/PANS. But since both illnesses often are triggered by an infection, the first line of treatment is antibiotics. If a person with OCD gets better with antibiotics it seems pretty evident that an infection exists. For some people, antibiotics is a cure, and no more treatment is necessary. Others are not so lucky. In many cases, the disease is more persistent and require some of the following treatments:
• Tonsillectomy
• Steroids
• IVIG (Intervenous Immunoglobulin)
• Plasmapheresis
• Biologic drugs such as Rituxan or Cellcept
Despite the good prognosis for people with PANDAS/PANS, the biggest problem these people face is getting the diagnosis in the first place. For us, it took eight years and six doctors to get a diagnosis, and it was me who first suspected my daughter had the disorder—not a doctor. In fact, every doctor I mentioned it to rejected the idea because my teen daughter didn’t fit the ‘Pediatric’ mold and onset wasn't 'sudden.' I was so sure something was off that I had mold remediation done in her room and took her to a holistic doctor for testing a couple of years ago. I had no idea what to do with the lab results (which cost a fortune) or what to make of them, and my daughter was starting to do better so I let it go. Sadly, from the parent groups I’ve since joined, rejection seems to be a pretty typical response from doctors who are either stubborn or uninformed. Many consider PANDAS rare and controversial - but it isn’t rare... Just rarely diagnosed.
If you or someone you know struggle with any of the symptoms I mentioned above, I hope this will inspire you to dig deeper, search for answers online and find a PANDAS/PANS expert to meet with. Get yourself or your loved one in front of a doctor who is willing to dig deeper, run the required labs and not just accept someone else’s (mis)diagnosis.
