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Saturday, August 23, 2008

Never a dull moment

OK, OK, I'll say it, UNCLE!

Yesterday morning Dave went very early to his hyperbaric oxygen treatment. Ellie had been up again at 3:47am until after 5am. She wanted to come down at 5 but I didn't let her because I was worried about how little sleep she was getting. I had fed her and changed her diaper and held her and tried to coax her back to sleep getting more and more frustrated. Finally she lay down and scooted her way close to me. And then alternatively had reached out to grab a fist full of my t-shirt and then push me away. I decided that maybe my presence was too distracting so I put the blanket on her and stood by her bed until she fell asleep. Around 8am I heard her peep. I was so tired I let her peep a few times. She does that - makes a sound and then you go in and she has turned over again on her side, thumb in mouth, asleep. But then I heard an odd gurgle and ran in there. She was seizing. She wouldn't look at me when I called. I tried a few times. Nothing. She wasn't in there. Her eyes deviated to the left. I turned her on her side and gave her the Diastat kit and called 911. I kept calling to her, telling her mama was here and that she was a brave girl and that it was all going to be ok. This was a weird seizure because she grabbed my finger and held on with her little fist. Her color was good but the gurgling did not stop. I was worried about her choking but her color stayed pink if not a bit pale.

The EMT's were there within 4 minutes. They must know me on the 911 call because I called and the woman on the line said something like what is the problem. I said, my daughter is having a seizure. She said, what's your address. I told her and she said, we're on our way. I hung up after the 15 seconds all that took and went back to Ellie. I have since put a phone right by her bed because running into my room to make that call was excruciating.

She seized for around 40 minutes. Luckily they didn't have to give her as many meds as they did last time - just a 2.5 more milligrams of Valium. Last time it was three doses of ativan and one of fosfentoyn or something like that. It's in the post I wrote about that over a year ago, under the seizures tab. For some reason I don't want to commit the gory details to long term memory.

We were home again by 5pm because after Ellie had slept off the Valium she perked up and it was good to be able to care for her at home.

I'm sad. She was so bright and had just gotten her energy back. Her depakote level was 68 which is in the therapeutic range but apparently not for Ellie. My hope that she would out grow the seizures any time soon is gone. Her dose is upped by 125 milligrams now so we will see how her energy level is after two weeks when she adjusts. If it is low I am going to talk to the neurologist about trying some other drug. God I HATE giving her all these drugs - but if I don't the consequences are just as bad. The neurologist thought her latest bout of no-sleep and sleep being off might be due to subliminal seizure like activity that had been going on.


I'm tired. I'm sorry. I feel like I am a bad mother. I feel like if I had gotten up with her at 5am like she had wanted versus trying to help her back to sleep maybe she would not have seized. I feel like my bad mood over Dave's finger and the stress of dealing with it all brought her seizure on. I feel bad that she has to be on a drug that deadens her brain activity at all. She's so brilliant and we got to see that more and more over the past couple of weeks. She seemed fine today if not tired. I worked hard to make sure she was hydrated and getting her meds at precisely the right time and not letting her nap too much in the day so that she can get on a regular sleep cycle. I have set my alarm for 6:30am so that even if she is up at 3:47am I will wake her early and get the sun on her face to try to reset her internal rhythms.

She was practicing her finger spelling today again. That made me happy. I always worry she will lose something after a seizure. Her latest words are Mama, Santa, Dada as well as signing the ASL numbers 1-5. She is working on the letter's B and I and R - the open hand ones are harder for her. She even went in her pony for about half the time she normally does but it's a start. She's such a little sweetie and she is growing fast. She has really taken a stretch over the last couple of months getting longer all the time. I wonder if her brain is changing too and more prone to these fire storms when she is in a growth spurt.

Not much more to say, am still feeling a bit numb.