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.

Thursday, April 2, 2009

Seizures just suck

I wish I had good news to update you with.

So Marley had a febrile seizure the day that she got her Hep A, Varicella and MMR vaccinations. I was so unprepared. One moment she was acting totally normal then she screamed and seized for about 45 seconds. After a visit to the ER and a night in the hospital, we came home...all very exhausted.

Nine days later, after she went to bed I heard her wake up, moaning. She eventually fell back asleep and when I went to check on her I noticed that she was very stiff and barely breathing. I picked her up and she was very lethargic- rather postictal like she had just had a seizure. As I held her and we rocked, the right side of her body seized up. She was crying and her head turned to the right while her eyes deviated towards the right too. She was breathing but completely unresponsive. Once again we went to the ER and she continued to seize for the next 2 hours. She eventually fell asleep, and when she woke up a half hour later she was back to her usual goofy self. A CT scan was performed and came back normal. We were discharged with rectal valium but no anti-seizure medications. The reason being is that kids are not prescribed anti-seizure meds until they have had at least 2 real seizures.

So we went home and waited...on the edge of our seats. Marley slept with us for at least a week before I felt comfortable enough to let her sleep in her own crib. Since that horrible night I check on her constantly. I haven't had more than 3-4 hours of straight sleep since. I am exhausted.

Marley had an EEG on Monday that was normal. Great, right? Well a normal EEG doesn't mean she won't have anymore seizures. I know in my heart she will have another; its just a matter of time. I teeter between complete paranoia and total despair. I try not to think about it too much because the fear is overwhelming. I can't prevent it, I can't know when it will happen...I just know it will.

We meet with a neurologist next week. I have so many questions. I don't even know where to start.