Theories behind PANDAS and why I think this happened to us

A perfect storm Inflammation (Sam suddenly started drinking milk, something she had never done before which we know she is sensitive to = immunological activation + inflammation).  This also affected her gut health which is strongly correlated with immune and neurological function.

Sam caught Strep which began molecular mimicry and overactivation of the immune system.  Molecular mimicry is when antibodies intended for foreign proteins and invaders may cause lesions and pathology in healthy tissue (nerve cells). These now act as ‘neurotoxins’ in the brain.

 “PANDAS is believed to be caused in part by molecular mimicry – the neurological symptoms being a result of GABHS antibodies acting against an individual’s basal ganglia and neural tissue”

General stress so that there are less resources available for the body to deal with the gut, immune and inflammation issues mentioned above.  High cortisol levels and hormones in general (starting grade 6 – I took Sam to Universal studios for her birthday Sept. 15^th – 18^th, so the stress of coming back to reality, starting Grade 6, so many kids / social situation to deal with after the summer of general ease, school work, hormones etc).

Energetically, some would (and have) say this happened for my journey to be a better doctor and Naturopath.  Navigating the school and medical system to access resources, REALLY understanding what parents are going through, and I'll admit, it's been a while since we've been gluten and dairy free, so even navigating the grocery stores.  I 'know' what to do yes, but the learning curve of applying it all again.

The plan

1.      Anti-microbials

2.      Anti-inflammatory lifestyle (no gluten, no dairy, no corn, no sugar)

3.      Treat the gut

4.      Decrease neurotoxins

5.      Anxiety strategies

6.      Home schooling for 4-6 weeks (who knew YRDSB did this)

A glimmer of hope through the hell – PANDAS confirmed

For the past 4 weeks, my family has been living through hell.  Our strong, independent daughter had turned into a scared, aggressive ‘wild animal’ overnight.  Each morning I would wake in a panic, what would this day bring?  The psychologists assured me forcing her to school each day was necessary, “you must fight anxiety with exposure, even if for 30 minutes” – but each exposure made the situation worse.  She went from extreme depression, to extreme anxiety to panic, aggression and opposition defiance, the symptoms getting worse.  Planning the follow day became a nightmare, would she go to school? what class? we can’t leave her alone so who will take off work?  I stopped booking patients and making any plans.  And although “mental health affects us all, let’s talk” is a common slogan – the stigma and embarrassment makes it hard to talk about.  I’m a Naturopath who FOCUSES on anxiety, how can my own child be this out of control?  How could I not have seen the signs?  From someone who never takes their children to the doctor I was having 3-4 appointments weekly with different specialists, private school, home schools, teachers – anything to help us dig ourselves out of the hell and start on a new path. 

It took 3 weeks before I could even start to tell my friends and family about what we were going through.  Finally, I broke down in tears in front on a colleague and friend, who once I told my story said “Deb – your daughter has PANDAS.  Test her for strep”.  A few days later, sure enough, Samantha tested positive for streptococcus.  Thank god there is a reason for this extreme abnormal behaviour, PANDAS is now part of my story, Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus’. 

We begin treatment today and the research and battle begins.