A big frustration of mine is when one of the two following situations occurs:
-friends/family don’t “see” Hudson feeling the way we describe and think we’re exaggerating. The child with PANDAS is not faking being sick. They are faking being well. And this is extremely hard on them; when the friends and family leave or the child leaves the public event, they will breakdown from the exhaustive work of having to pretend for a short while that everything is okay.
-new friends/extended family misunderstand PANDAS when we explain it and think Hudson is afflicted by it 100% of his life, not realizing that when he is healed from a flare, he is completely healthy, happy and super cool to be around!
I found the best way to combat either of these was to document both situations (the good and the bad) with pictures!
At neighborhood pool too anxious to enjoy swimming or friends 
Back at pool once IVIG relief started to kick in, happy to be back & ready for fun!
During his worst days, driving anywhere was an overwhelming feat. He’d often request to pull over to lie down. 
Post-IVIG relief, back to his kick butt self–winning medal for scoring 19 points!
