Thursday, August 19, 2010

i'm actually cool with this latest development, but every time i write a title it sounds bitter, so this is the title now

in the last six weeks, we've had a clinic appointment every week.

  1. cardio. (the emerg appointment for function echo)
  2. immunology. 
  3. cardio (for holter)
  4. nephro
  5. cardio (for echo)
  6. neuro
immuno was the usual "dunno. see you in six months." cardio was unproductive each time. nephro was delightful, since we don't go back for another year. then neuro today.

i'll admit, i actually had no idea what to expect today. i figured they'd formally diagnose asher with migraines and febrile seizures, but beyond that, i was in the dark.

but it turned out to be a very interesting appointment. as it happens, asher does not have migraines, which is a relief. and they weren't concerned with over three years of low oxygen to the brain, since he's developmentally on track (if not advanced), so that's also good. it was the seizure activity that caught their attention.

febrile seizures have been ruled out, but have been replaced with "seizures with fever." sounds like just a change in word order, but it's actually not:
  • febrile seizures are seizures that are triggered by high fever.
  • the term "seizures with fever" puts the focus on the seizure, and the fever is almost an after-thought. like it's something that coincidentally happens at the same time but is only remotely linked, if at all.
they now believe asher has epilepsy. i'll admit, this threw me for a loop, since this had not even occurred to me. at all. ever. i went in and was telling them that my parents, brother and cousin all get migraines. but for some reason, it never occurred to me to mention that my uncle has epilepsy. but when they asked if there is a family history of seizure disorder, i mentioned it, and they did the whole "nodding pensively" thing which heart and SN moms know so well.

so developmentally he's on track, he doesn't get migraines, and he has epilepsy. surprisingly, i'm actually laughing as i type this paragraph. you may think it's a "if you don't laugh, you cry" kind of thing, but i don't really think it is. (mind you, that could be because i haven't looked into epilepsy yet, so it's still a bit surreal, but i'm not freaking out, so that's a good thing.) they are ordering an EEG (i'll let you know the date when i find out), and we go back in four months. not as good as nephro's year, nor immuno's six months, but better than cardio's three, so i'm cool with that.

after the appointment, we moseyed on over to spend a few hours with our friends Allison and Brigid. the kids all played, allison got a smiling pic of asher with a mohawk, we ate some amazing banana bread, and... um... something else happened... what was it again?...

oh, yes, i remember...

asher had two seizures. nothing major. none of the shaking and everything you're likely imagining right now. no, these were "absent seizures." he was sitting at the table chatting away, then he stopped and went blank and unresponsive. and i mean, i was in his face saying his name, and nothing. just staring out the window. and there was nothing out there to look at. and wow, again, that all sounds like something that might scare some of you. it really isn't. kind of amusing that he did it after the appointment, but who knows? maybe he's been doing it all along and i just haven't noticed or have brushed it off because i didn't recognize it as seizure activity.

all things considered, i'm cool with all this. sure, it might not be spectacular news, but it's an answer. which means that it's not just all in my head.

it's in his. {wink}

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