Thursday, April 23, 2009

A step forward?

I really can't tell where I'm at.

We met with the neurologist who recommended (though Marley's EEG was normal and she hasn't had a seizure in over a month) that she start on the anti-seizure medication, Keppra (or the generic which is too hard to spell).

I can't say I was surprised and if I was looking for a doctor's appointment where there seemed to be a solution to a situation, this was the one. His rationale was that most likely she will have another seizure in her lifetime- be it febrile or complex, so why not try to nip it in the bud before it becomes the big, ugly monster that a seizure disorder can quickly turn into? Sadly, I had to agree. In my heart I know she will have another seizure. It's only a matter of time. And I can't wait on edge for the next one to hit at anytime. It's like living on the San Andreas fault in a  flimsy little glass shack. I'm insane if I didn't think the "big one" will hit in my lifetime.

Unfortunately, the Keppra is no guarantee that the seizures won't happen. Isn't that completely fucked up? Fortunately, Keppra has few side effects- mostly sleepiness. 

So after much hemming and hawing we started giving it to her a week ago. Instructions were to start at 80 mg daily for 1 week then increase to 80 mg twice a day. I haven't mustered up the courage to move to twice a day. Not that she's having any side effects- hell, I can't really tell. She sure isn't any sleepier but she does seem more agitated, which could just be normal teething behavior. It's constant teething around here nowadays.

I just didn't want to go there. I just didn't want to admit that my baby has to be on medications. I use to say to myself when Marley was an infant, "with everything she has, at least she doesn't have seizures or is on any medications". Strike that. I feel so defeated, like what do I have to look forward to? We're still diagnosis-less, we still don't know what the future holds for her or us. There are no answers, no direction, the road is empty, wide open and there are no signs directing me as to which way to go.

So for those who see me on a daily basis, or maybe weekly or hardly at all- when you ask me how I am or how Marley is, I apologize for my vague answer. Honestly, I'm just okay and so is Marley. I wish I could be more cheerful, more hopeful but I just don't feel that way. So please don't be put off but my meek smile; I really do appreciate the gesture.

1 comment:

Sophia said...

Amanda, I think the biggest challenge of parenting is trying to live in the moment, not always looking ahead at what they will be able to do or what they should achieve. It's hard, but what if we could just enjoy their company right now, without thinking about all their strengths and weaknesses and all the heart-ache they cause us when they don't live up to our expectations? You're doing all you can, give yourself a pat on the back and just enjoy her love and affection.
Love to you,