Keppra: the devil drug

Let me begin by saying that this is MY opinion of this drug in MY child.  It is incredibly effective in MANY epileptics, and doesn't impact them negatively.

My child, however, is not in that majority, and for her, this drug was the spawn of Satan.

Those of you who've followed this journey elsewhere may remember that last May, my sweet and sassy girl became an angry screaming hitter.  Despite the reduction in dose to the point where she wasn't whoopin-up on me, she just never was quite the Demie Diva I knew and loved.

When you are the parent of a special needs child, you tend to blame the condition rather than the treatment at first.  I became convinced, in no small part because Diva Grandma is a nurse, that despite what everyone was telling me this drug was taking away my child.  She was just "flat".  No sass, no sparkle, and definitely no sweet.

We traveled a road through school difficulty, which was long-term great since it got the Demie Diva diagnosed with ADHD sooner than would otherwise have happened.  I realized what a recluse I'd become because I couldn't trust her moods.  I definitely couldn't trust her to stay put and control her impulses.

When we got the okay to titrate down on the devil drug, I was ecstatic.  I was pretty sure that I'd find my girl somewhere in the middle of the process.  I didn't count on a moody, angsty first drop.  (Man, that was proof positive that she was affected by the drug)  I certainly didn't count on the spontaneous shows of affection that I hadn't even realized I'd missed.

Imagine going without spontaneous "I love you" from your child for MONTHS.  That was what Keppra did to her.

As we've gotten her down - and with one more titration to go - I can honestly say that she's back.  She has epilepsy.  She has ADHD.  She has the spirited personality that has me reading books about spirited children - and laughing in recognition.

What does this mean for her, long-term?  Well, it means we will do another year of pre-K rather than start kindergarten in August.  She likely will be academically ready - particularly given the asinine standards of 'readiness' that our current state of residence establishes.  However, we don't know where the holes are - socially or otherwise.  That drug, and the epilepsy it treats, cost my child a very important year.  No one says we can't start her in first grade when the time comes; but we can't risk having her hate school given her rather autonomous personality.

Does this cautionary tale have a moral?  I suppose it does.  The moral is...trust your instincts.  No one knows your child better than you do, and every doctor in the world can only do so much.  You and you alone are your child's best advocate.