Current mood:	angry
Entry tags:	disability, fail, ocd
Crossposts:	http://rhipowered.livejournal.com/798615.html

Please note: The below post is my personal opinion and should not be taken as medical advice to anyone else, nor is it meant to negate or trivialise other conditions.

So I saw the book Saving Sammy at the public library, and after picking it up and skimming the inside cover, I sort of couldn't bear to read it, mostly because the subtitle is 'Curing the Boy Who Caught OCD'.

Caught. OCD. Cure.

Now, for those of you not aware, a few years back, the US National Institute of Health concluded that in some children with sudden onset OCD and/or Tourette syndrome (henceforth TS), the conditions appeared after the children had had a strep infection, and that this could possibly be causal. Your bog standard OCD and TS are, apparently, slow onset in pre-pubertal cases, and these cases came on rapidly, like a switch was thrown. This proposed condition is called PANDAS, an acronym for something I'm too spoon-less to write out here involving strep and pediatrics and psychiatric disorders and stuff.

Now, I'm not judging whether or not PANDAS is a valid diagnosis; studies to date are inconclusive. This frustrates parents to no end, as the author of the book notes in her FAQ: Many doctors don’t believe that PANDAS exists; my son’s experience demonstrates that it does. I should not have to point out the faulty logic there, nor why doctors could be skeptical.

Her cause, I should note, has been taken up by the folks at Age of Autism, who are generally accepted in the disability community as fuckheads.

Now, I'm not a scientist, and maybe there's causation instead of correlation. If so, I would hope like hell that PANDAS gets shifted to become a separate condition from OCD or TS or any other psychiatric condition. My OCD was rapid onset, at just about the pubertal cut-off age for pediatric diagnosis in this situation. Needless to say, my concern is a sudden sharp fear that there'll be hundreds or thousands of parents dragging kids for testing, for research, for a cure that'll never come. (Nearly every US kid gets a strep infection at some point.) Real pain and concerns will be ignored by the thought that brains can be easily sorted by treating a physical condition, without consideration for lasting effects nor ongoing issues.

Really, that's my deal, Beth Maloney. I'm glad your son is better (and heh, you had the privilege to get him to loads of doctors until you found one who'd listen to you). Just don't fucking tell me you've cured OCD when there's no cure for the vast, vast majority of us, including some of us who were kids your son's age when first diagnosed.

Don't even IMPLY it.

Except you already did, with your book and your diagnostic kit that you sell and your speaking appearances. How many kids have you fucked over?

(Someone please tell me I'm not wrong to be reacting this way.)