Two years ago, Bug was diagnosed with epilepsy. Since then, he has been on a mild anticonvulsant to calm those little bursts of brilliance down. Since he hasn’t had an episode in that time, his neurologist Dr. K. ordered a routine EEG to see how he has responded internally to the medication.
After staying up until midnight, waking up at 4am, and eating nothing but popsicles (much to Bug’s delight), Hubs took our little Bug to the lab for his EEG. After taking a test that basically sleep- and grub-deprives you, then flashes strobe lights at your face in order to provoke an epileptic episode, the results were in: everything was normal.
Can I get an “Amen!” from the gentleman in the back?
So the next step is to slowly wean Bug off his medication over the next five weeks or so. By mid-March he will be drug-free.
Except – and this is where Hubs and I stopped breathing, and don’t plan on releasing that breath until, say, 2015 – up to 40% of children have a relapse within the first two years of being off their medication. (I seriously considered homeschooling at this point, despite my complete and utter inability to teach.)
But then again, that’s 60% of children who have successfully grown out of their epilepsy after 2-5 years of medication, and as high as 90% of children who eventually grow out of it by their teens.
But then again, only 1% of the American population will have even developed epilepsy by the age of twenty.
So in other words, it’s sort of common to outgrow a highly uncommon diagnosis. This is a statistician’s (and a parent’s) nightmare.
We are, however, cautiously excited about what this means for Bug, as we slowly phase out of a routine that has been our daily companion for the past two years, as we watch and wait and wonder if It will strike again, and hold our breaths every time he moves out of sight and into the care of another, possibly less-diligent, probably less-involved adult, as we try to refrain from going overboard and banning monkey bars, slides, the second floor of our house, sleepovers, swim lessons, and all other things that could prove disastrous if It were to strike then and there, as I try (probably unsuccessfully, I’ll let you know) to refrain from becoming Hover-Mom, as I stare at his new prescription for Diastat, fully intimidated by its mere existence in my home, never you mind the thirty-page pamphlet outlining how and when to use it exactly, as I try, try, try my darnedest, most likely on an hourly basis, to entrust to God’s sovereignty the well-being of my most prized possession…
It’s overwhelming, and nerve-wracking, and all-consuming, if (or rather, when) I dwell on it long enough to let it be, and I’m pretty sure I won’t be getting a fully refreshing breath of air, the kind that makes you feel like your lungs just settled back into place, at least not for the next 2-5 years, until that 40% statistic vanishes from our timeline and we can place Bug squarely in the 60% one.
7 responses to “Funky Town Waves No More”
First off, man, what a handsome guy (not the one with the wonky eye).
And two, that’s a tough scenario. One can tell from your writing that it’s good new witha catch; just enough comfort to be uncomfortable with. I’m pulling for the 60%, most importantly for the Bug, but also for your family’s peace of mind.
Word. He is the looker. I had…oh, everything…to do with that. Nevermind he looks just like his dad.
Thanks for the thoughts. We’re pulling for 60, too!
Absolutely a cute guy. I’m glad to hear about the success so far. As I’m just jumping in here and learning the basics, I can tell that the most important aspect is in place–a family that’s focused and supporting each other. Keep that perspective and you’ll do as well as possible. If homeschooling puts you all at peace don’t be afraid to go there. One day, one decision, at a time.
Thanks for the encouragement!
And the homeschooling thing was just a knee-jerk reaction. I already plan on moving in with him when he leaves for college, so I’ll give him these years. (Just kidding…or am I?)
My sister Lori Funderburg sent me this link and I am so glad she did. Our daughter has also just come off of over 2 years of anti-seizure meds (she had infantile spasms) and we are totally freaked out by the statistics and the fact that we have to carry around emergency valium (for her, not me). I really appreciate you sharing your story. And glad to hear he is doing well! He is very cute! and the doggie too.
Thanks for reading!
Yes, it is so scary – I hope we never have to use that little syringe of Diastat, because I still don’t know exactly how to administer it.
Good luck to you and yours!
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