Thursday, November 20, 2008

stfu.

i am soooo tired of self-proclaimed open-minded people proselytising
that i have just deleted all my email from 1 november until today in
most of my email accounts. i have news for them: wanting everyone to
agree with you is not 'open-minded'. get over your damn self.

honestly; i have more politically-based bullshit email (or *had*,
rather) than i ever hope to see again in my lifetime, and it is not
just one group -- everyone seems to have gone batshit.

now for Other News:

Harry-the-Human was just let out...they say his seizures are not
epilepiform, and have packed him onto a plane after a little over
forty-eight hours of video eeg monitoring, which i feel is too short.

having evaluated, purchased, set up, and utilised two complete neuro
sensing suites, i most assuredly am so too qualified to hold this
opinion. so there.

butsoanyway.

so i had it out on the phone with one of the neurologists when Harry
asked her to phone me. she suggested -- after i pressed her for a
believable alternate dx -- that Harry has complex migraine. i had to
ask why, if she really believed that, would she take him off keppra,
and his other aed cold-turkey and send him home on depakote when
depakote alone has already been shown to be ineffective with Harry. i
suggested topamax (good general results with both epilepsy and
migraine), which he has not tried yet, and a step-down of his current
aeds (which is only common sense), and she vetoed those suggestions
for reasons she would not explain to me.

it is always easier to fuck with people when you can do it from a
distance, i have observed. did i mention that i have lost a heaping
helping of respect for this place?

this is ridiculous because, while Harry may well have absence-like
seizures as a result of complex migraine, he quite
assuredly-fucking-does also have epilepsy. the two *can* co-exist.
see, Harry had spinal meningitis when he was an infant in lebanon (his
father was military; he was conceived and born on base, is an American
of French-Italian descent, and...sigh...has the birth certificate to
prove it. sorry -- have to toss that in these days, it would seem),
and has two huge lesions in his brain as a result. i have personally
seen these lesions on mri. Harry had seizures as a child (his psycho
italian mother from sicily let the army doctors put Harry on
phenobarbitol and when he kept having seizures, she tried to have him
exorcised -- i am not kidding -- and when the priest refused, she
decided that meant Harry was faking, which is pretty talented for a
boy of six or seven, imho), and then the seizures stopped until he was
about thirty (although to hear him give his history, i have to wonder
if they didn't just express as partial seizures, because he has some
stupidities that are hallmarks of TLE throughout his life). i have
also personally witnessed Harry having both tonic-clonic and complex
partial seizures, and this 'migraine headache' this ladyneuro is
claiming Harry has has been understood as a common post-ictal headache
by three other neurologists. so *there*. in addition, Harry was
qualified through the epilepsy foundation as having epilepsy (after
eeg testing), then had a vagus nerve stimulator implanted with his
first neuro, which required further evidence of epileptiform activity,
then moved to another neurologist, who *further*tested him and used
those results to get him on disability, and Harry spent a year having
*those* tests challenged and re-done before he was finally put on the
disability dole. on top of all that, Harry had a partial seizure and
did something really stupid (too long to describe here), and instead
of getting arrested he was put in hospital and had YET MORE shit run,
which also showed artefacts from an epileptic seizure. lastly, *i* say
he has bloody fucking epilepsy based upon my observations and the
available evidence, and i am not wrong because i say so, so *there*.

and that is why i had to eat an ice-fucking-cold lunch, cos i was
arguing with this silly bint. i even fussed at her to take a stand one
way or the other -- if he has epilepsy, we need to keep him on his
meds and look at different combinations if the seizures aren't
controlled and he is not a candidate for surgery. if he is not
epileptic (snort), then we should step down his meds and gradually
withdraw them, replacing them with her beloved depakote (just shoot
me) and my suggsted topamax or an equivalent for when the depakote
turns out to be the same epic fail that it was before...but she would
not commit to any decision, which really made me angry. then, as if i
weren't rabid enough already, she starts in with trying to explain
that Harry is pickled and what i think are complex partial seizures is
really Harry being loopy cos the neuro before this current one put him
on valium and/or klonopin after i suggested Harry carry it with him
and use it when at work, etc., if he feels a seizure starting.

well, they actually ARE aeds, and they also help him from getting
panicky if he thinks he is about to have a fit. further, i am not a
motherfucking neurologist, i just study the brain, so what the fuck do
i know? i knew he was on a cocktail and still fitting, so the
second-most harmless thing i could think of that might help was
benzodiazepines, and his neurologist thought that was a good idea.

in case anyone is simply dying to know, the firstliest most harmless
thing i can think of would be magnesium, but valium is more effective.
so mystery solved.

anyway, so now starts a new battle, i guess. whee. i have to t

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