Epilepsy update

22 Jul

I’ve been getting quite a few inquiries about how Jade is doing, so I guess it’s time for an update.  There’s no way to say concretely at this point if she is truly “better” or “worse” — she’s still having seizures every day — but I think that as a family we are coping with it better, so that’s gotta count for something, right? 

We’ve been in pretty close contact with the neurologist’s office in Vancouver and have made some adjustments over the last couple of weeks.  Because of the amount of seizure activity we were observing a few weeks ago, Jade’s drug dose was increased a couple of times.  She also had some bloodwork to check the level of drug in her system, and we learned it hadn’t yet reached a “therapeutic level”, so it’s not surprising that the seizures are still coming.  She’ll be tested again in a few weeks and we’ll compare that to the seizure activity we’re observing to make an assessment of how well the drug is working.  Her neurologist’s appointment and follow-up EEG have been moved from mid-September to late August, to our great relief.

Other things we’ve learned:

  • it can take up to two months for the Valproic Acid to reach a therapeutic level (assuming the dose is high enough)
  • general “spaciness” can be one of the temporary side effects of the drug 
  • colds and viral infections can cause more seizures than normal (even seizure-free patients sometimes see a return of seizures, apparently)

Because our, ahem, “summer” weather has been so wet and cold, everyone in Whitehorse has been passing colds around; Jade certainly hasn’t been immune to them.  We’ve really noticed a difference in the seizure activity depending on how healthy or sick she is.  In a way, it’s encouraging, because if we see things deteriorating we can at least have a clue as to the reason.

I think that’s the real curse of Jade’s epilepsy: the not knowing.  As parents, it’s hard not to be able to know why things happen.  They tell us it’s not a structural problem (no tumours — great!) and that it’s not a biochemical reason, but how could they possibly know every last environmental factor that might cause seizures?  Yes, her epilepsy might be genetic (their assumption) and it could be caused by one gene or multiple genes interacting together, so there’s no real point in testing to figure it out.  But couldn’t it just as well be something she was exposed to when she was in utero?  Or something she’s exposed to every day at home?  I know it’s useless for us drive ourselves crazy, but it’s hard not to look around and think, “Maybe there’s mold in the walls.  Maybe our cleaning products are making this worse.  Maybe she’s got a food sensitivity.”  Yes, we’ve actually had someone come in to test the house for mold.  And we switched her to goat’s milk, but found that avoiding dairy altogether is so hard, we’ve given up on that.  (There were reasons for trying this, I promise, but it’s just too long a story.)  Still, the guilt and the sense of culpability is easing and I know I’m feeling more hopeful that once the medicine reaches a good level in her system, we’ll see an end to the endless seizures.

In the meantime, Jade seems to be developing.  She’s learned some new words and expressions since the onset of her epilepsy (though we still think she may be a bit behind verbally), and she’s learned how to put her pants on by herself (mostly — the hind part never gets pulled all the way up), not to mention how to take her clothes off by herself.  She’s not gaining weight at an alarming rate.  She’s excited about my growing belly and recently started “breastfeeding” her dolls.  It’s so heartening to see that she keeps learning.

I sometimes wonder if people think we’re making this all up.  On good days, Jade may go for hours with no seizure activity.  And most of the ones that happen later in the day are so mild, others don’t even notice them.  Her arms will jerk a couple of times and I’ll say, “There, she just had a seizure.”  And the other person will say, “Hunh?  I didn’t see anything.”  Or she’ll have an absence seizure (basically she freezes what she’s doing, often with her eyes rolled up a bit and her mouth hanging open a little) and I’ll say, “Whoops, she’s having a seizure.”  And the other person will say, “Really?  I thought she was just kind of spacing out for a moment there.”  They’re not always this mild, but the milder and more infrequent they get, the happier I’ll be, that’s for sure.

6 Responses to “Epilepsy update”

  1. Malva July 23, 2008 at 4:31 am #

    I’m so glad for you it seems to feel a bit more manageable. You’re coping quite well. 🙂

  2. lonetruth July 23, 2008 at 9:08 pm #

    When my white friend dances, it looks like he has epilepsy. What can I do to help him out?

  3. fawnahareo July 23, 2008 at 9:31 pm #

    Thanks, Malva!

    Um, Lonetruth… I suggest you learn to dance his way to make him stand out less.

  4. Turkey July 24, 2008 at 9:22 am #

    Good post, fawnahareo 😉

  5. megan July 24, 2008 at 11:41 am #

    So glad to hear that you guys are finding your way through all the white space you seem to have encountered. Hoping for more progress & good news on the meds soon.

  6. Charmaine July 24, 2008 at 6:41 pm #

    Thanks for the update. I always tend to ask you when I see you but I was not sure if you would be tired to telling the same thing over and over, especially something stress you out so much. Anyhow, I truly hope this can be ended soon. I am so impressed with you and Michael!

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