It’s Hell, a nightmare, a struggle, a test of courage, scary, overwhelming, and it’s REAL.
I’ve talked to a lot of Parents/Caregivers dealing with PANDAS, and I’m one of them. We can give you the official definitions of PANDAS/PITAND/PANS, and liken it to Rheumatic Fever of the brain to give you a reference point. You’ll smile and pat us on the back and wonder out loud how we do what we do. Or sometimes you won’t understand, and you’re hostile with us or ignore us because if you refuse to see it then it’s not in your happy world. We know most people don’t understand this condition, and what it’s done to us. We barely know what’s happened to us and our families.
PANDAS is way more than a textbook definition. Every child is affected differently with their own set of symptoms, but with enough similarities that you start seeing it everywhere. Some PANDAS kids have multiple conditions and multiple infections, and then as a parent, you start taking a bigger look at your own health. PANDAS affects so many aspects of your life and your child’s life, and…well, it affects everything. In good times, you wonder if a bad exacerbation is on its way. During a bad PANDAS exacerbation, you’ll wonder if you’ll ever see good times again. And then there are just days that are in the middle when things could go either way. But the kids DO get better and good days DO come back. There is hope in PANDAS. There is hope.
Here are the official definitions of PANDAS and PANS cited from the National Institute of Mental Health/NIMH. But if you ask any PANDAS Parent/Caregiver what PANDAS is, they know that it’s way more than these words.
What Is PANDAS?
Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections
PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. The term is used to describe a subset of children and adolescents who have Obsessive Compulsive Disorder (OCD) and/or tic disorders, and in whom symptoms worsen following strep. infections such as “Strep throat” and Scarlet Fever.
PANDAS is the sudden onset of OCD often displayed as severe anxiety and emotional disturbances plus 2 OR MORE of the following symptoms: tics or other abnormal movements; severe separation anxiety, generalized anxiety; irritability, emotional lability, aggression, personality changes; ADHD, inability to concentrate; sensory sensitivities; deterioration in learning abilities and school performance; developmental and age regression (inc. deterioration in handwriting); sleep and night time difficulties; and/or urinary frequency or daytime/night-time secondary enuresis.
The onset of symptoms are corresponding to an infection, usually strep. PANDAS children may have moderate to dramatic improvement with antibiotics within one week of treatment, however, further interventions may be needed. How to stop the entire syndrome is still debated, but many parents and doctors report prolonged antibiotics (two months to one year) and/or IVIG (intravenous immunoglobulin) treatment or plasmapheresis.
PANDAS is actually a form of PITANDS (Pediatric Infection-Triggered Autoimmune Neuropsychiatric Disorders), with Group A Streptoccocus as the trigger. PANDAS falls under the umbrella term PANS.
What is PANS?
Pediatric Acute-onset Neuropsychiatric Syndrome
PANS is a newer term used to describe the larger class of acute-onset OCD cases. PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome and includes all cases of abrupt onset OCD, not just those associated with streptococcal infections.
PANS (Pediatric Acute-onset Neuropsychiatric Syndromes) is a new classification introduced in the 2012 paper “From Research Subgroup to Clinical Syndrome: Modifying the PANDAS Criteria to Describe PANS“. PANS is broader than PANDAS and PITANDS as it includes not only disorders associated with a preceding infection, but also acute-onset non-infectious triggers, such as environmental and metabolic. No treatment plan for this syndrome has been defined at this time, but treatment plans similar to PANDAS should be attempted.
The 3 criteria for PANS are: abrupt, dramatic onset of obsessive-compulsive disorder or severely restricted food intake; concurrent presence of additional neuropsychiatric symptoms, with similarly severe and acute onset; and symptoms are not better explained by a known neurologic or medical disorder.
PITANDS (Pediatric Infection-Triggered Autoimmune Neuropsychiatric Disorders) with “Other Microbes” is similar to PANDAS in terms of presentation. However, it consists of a broader list of possible triggers, not only strep. Other Microbe PITANDS triggers may include Mycoplasma Pneumonia, Mono, Lyme, viruses, and more. More often the term PANS will take the place of PITANDS, which is a term that has fallen out of use. You will hear PANDAS if the initial trigger is a known strep infection. PANS will usually refer to any other bacterial, viral, environmental, or metabolic causes.