why PANDAS is evil, part three

we are evil i tell you...EVIL!

gus' strep test was positive, which surprised everyone because he is otherwise totally asymptomatic. hence the new diagnosis: PANDAS (pediatric autoimmune neuropsychiatric disorder associated with streptococcal infections). so, if i understand this right, cute, furry, cuddly, bamboo-eating, endangered bears have made my son's life a veritable hell for the past few weeks. apparently his body thinks that cells in his basal ganglia are strep bacteria and therefore attack his brain. it can cause OCD, tourette's, tics or sydenham's chorea symptoms, and considering that list he may have gotten off easy. it is not the bacteria that is the problem (or at least not the only problem), but rather his body's immune response to it that is causing him to be miserable. and every strep A infection will bring a recurrance. gus also had scarlet fever while we were in iowa, which may have actually been the starting point for all of this.

some interesting info on PANDAS is here

and here

but not here.

incredible and unbelievable, to be sure, but we are not out of the woods (or the bamboo forest) yet. gus has started taking antibiotics to kill the strep and we are trying to help him with the OCD symptoms. his teacher is wonderful--we are all so lucky to have her this year--and she is helping him at school. he is slowly getting better and he is asking us less frequently if he is going to die--instead of needing to be reassured 10 or 15 times that something is okay it is now more like twice. today he is still afraid of poisons, germs and bacteria (the latter rightfully so after all this) but he will get some help on how to cope with it if it stays with him. and he will be alright and happy and wonderful and everything that he was before all this happened. he will be all that and a bag of chips, and even more so--challenges like this shape the person you become and while i would not have chosen for him to be sick at all, i have to believe that he will be a better person somehow because of it. as much as it sucks for him we will definitely know when he has contracted a strep infection and can treat it quickly. one minor victory in all this is that gus doesn't think that anything is wrong with him, save having to take antibiotics for some infection that he doesn't feel. it will be interesting for all of us--me, rich, gus, his doctors, etc.--to see how this all plays out and how we need to adapt.

rare and amazing creatures, these 6-year olds are.