Seizures

We recently noticed the return of some"funny stuff" happening as Kasia was falling asleep for naps and at bedtime. Eyes that blinked oddly, hands and feet that seemed to bounce and twitch a bit too rhythmically and great big startling jumps. The kind everyone has now and again just as they fall off to sleep - it's called a clonic jerk. But Kasia wouldn't have just one, she'd have 5 or 6 before settling off into a deep sleep.


All these things I had seen before... before we had put her on anti-seizure meds. So to see these things happening again scares the hell out of me. I'm terrified that it's all starting again and she'll have another big seizure - the kind where 2 ambulances and a firetruck show up at the house and take her away. The kind where I'm leaning over her, stroking her face and telling her that she's okay while at the same time trying to calculate how long the seizure has been going on and making sure she's still breathing. The kind that has me holding my own breath until she opens her eyes and looks at me with recognition in hers. They're horrible, scary, hateful things and I never want her to have one again.

It's been about 6 months since she's had a big one. It was the day after Valentine's Day. I woke up shortly after 5:00 am with Kasia sitting up in bed next to me looking very......odd. She stretched out her arms towards me with a look of terror mixed with uncertainty of who I was. I held her in my lap, yelling for Dino but he had already left for work. The next thing I knew her little body started to shake, I laid her down on the bed and there began the longest seizure she has ever had. There were two calls to 911, the second one frantically asking why the ambulance was taking so long. When it finally arrived, unbelievably, it methodically backed into my driveway and the EMT's sauntered up the walkway like they were there to deliver Girl Guide cookies. I threw open the door with Kasia limp in my arms and screamed at them to get their asses in the house. It was 5:34 am and she was still in the seizure. My heart was beating out of my chest and I wanted to grab the EMT and shake him! Do something!! Finally he picked her up and carried her out to the ambulance, in her pj's - barely wrapped in a blanket and this is when I really went ballistic.

I walked out of the door into the frigid February morning and saw my tiny 3 year old, barely concious, strangely propped up onto the gurney with the seatbelt somehow fastened around her waist and her little feet bare and exposed to the freezing cold. I tried to jump in with her, as I always had in the past, but was forced to enter from the side door and sit in the seat directly behind the gurney. I couldn't even see her and was going out of my mind yelling at the idiotic EMT "Is it over? Are you sure it's over?!?!" They forced me to sit in that seat for the entire ride to the hospital and all I could see was her little hand dangling down. EMT #2, apparently the trainee, started to ask me background information about Kasia and I refused to even acknowledge his presence. EMT #1 then stepped in and asked "what my problem was". I told him this: "You sat me back here in a place where I can't even see my daughter. I don't know if she's okay, I can't see her face, I don't even know if she's stopped seizing. I've always sat on the gurney with her, holding her in my arms - I've never been forced to sit back here like I'm not even a part of this. And I'm really pissed off right now. I'm pissed off at YOU especially because I don't think you have a clue about what the hell you're doing. She's my daughter and you're treating me like I don't matter. So stop asking me questions because I'm done with you. I'll talk to the people at the hospital."

The nurse in the ER later told me that there was no way he could have known if the seizure was truly over - based on Kasia's condition when she arrived, the nurses couldn't even tell.

So, she's been on Keppra ever since, though the days when she was having seizures on a regular basis has obviously left its mark on me. Through all of this I've come to realize something - I am the parent, I know best, and I have every right to demand that my child is taken care of properly. I'm not afraid anymore to speak my mind. None of us should be.

A few days ago we increased her dosage of Keppra and have our fingers crossed that it's all that's needed to remedy the situation. Apparently she's still on a very low dose, so if needed, there's still lots of room to increase it some more. So far, it seems to be working. Only one big jump last night as she was falling off to sleep and no twitchy eyes or limbs.

I hope it lasts.