Odd Hannah

I am so far behind on blogging and I have a lot about seizures to update. However, we had an interesting experience that I can't stop thinking about and I want it on record.  Hopefully later on it's come handy.

Hannah did great when her Keppra level was 0.5 in the morning and 0.5 ml at night. She had no side effects and was seizure free for a good two months. However, for some reason they turned into weekly and we felt like the best thing to do was try an increase in her meds again. Unfortunately when she is at .5ml am and 1.0ml pm, it got harder to put her to bed and she woke up in the middle of the night more.  So two weeks ago I changed it to 1.0ml am and 0.5pm. Bedtime is still difficult but it still takes up to two weeks to adjust to medicine changes.

Yesterday, Hannah did not want to take her nap and since I still wanted to do some cleaning, I let her stay up until close to 1:00pm. Generally she goes down around 12:30pm. While I was busy upstairs, I heard tons of whining downstairs.  Hannah was just hysterical and I decided to put her to bed right away. She fought me and it was difficult, especially since the battle was still going on downstairs between Hailey and Robert. So I marched downstairs, unplugged the TV and sent everyone to bed. (Hailey gets my room since I still need her separate from Hannah). Then I was able to calm down Hannah. I then talked with Robert and Hailey and after a 5 minute nap they were able to play downstairs. The fight quickly started again and after another 5 minute nap, they had to help me fold cloths since I wasn't getting anything accomplished.  Hannah woke up around 3:00pm and for the most part everything was fine.

That night was also very difficult to put Hannah down. She just goes hysterical on us.  By 8:00pm she was asleep but woke up around 2:00am. And since I was with Rachel, we had a little party on the couch until I could put Rachel back in bed and focus on Hannah's needs. She woke up the next morning at the usual time (7:00am).

Today we went to the mall before lunch and so we had a later lunch. Hannah didn't go to bed until 1:15pm but went to sleep right away.  Rachel also fell asleep around 2:00pm, so I put her in her crib. As I walked by Hannah's room, I noticed movement. She moves a lot in her sleep, but as I checked on her she was actually in a seizure. I could visually see her shaking so she was in a grandmal seizure. I looked away to inform Nate that Hannah was in a seizure and by the time I looked back, she was done and still asleep. I don't know how long the seizure really was since I noticed it at the end but it almost frustrates me. 

We have her on a higher dosage to stop the seizures but causes sleep problems. However, she has seizures on the weekends normally (on the lower dosage) because her schedule and sleep is messed up. I really thought that we have figured out the magic dosage and she shouldn't have anymore as long as we are faithful with it. Which has been true! She hasn't had a seizure since the medicine increase expect for being sick and us forgetting her meds one day. Now my greatest fear of her having seizures in her sleep without us knowing is true.  I thought about a infant movement monitor for her in case she stops breathing but that won't work since she is having grand mal seizures. I have thought about a baby video monitor, but I don't have time to sit and watch her sleeping.

If I didn't see the seizure, I would not have known one happened because she woke up around 3:40pm and was completely happy and normal. She didn't sleep longer then really expected and her attitude was typical Hannah. I worry about how many other seizures I have missed.

Nate and I went on a date tonight and was back by 7:00pm to put everyone in bed.  We were a little slow with picking up toys and getting ready for bed. Hannah and Hailey both have red bumps on them so it took time finding them and putting cream on it.  Ultimately, I was tucking Hannah in around 8:00pm. She usually likes her covers on, with her cup of water and doll, bear, and a sucking blanket close by. Then I sing the song she picks out (twinkle, twinkle (she wiggles her fingers in the air to pick that one) or itsy bitsy spider (she wiggles her fingers close together to pick that one)). Then she lets me know if she wants me to do the actions or rub her head, depending on where she puts my hand. After a song or two I kiss her good night and leave. Tonight after I told her we were done with songs (she wanted more) and gave her a kiss, she kept kissing me repetitively. It was actually really strange. She would lay down, smack her lips, reach up to kiss me then lay back down again. She did this repetitive motion 10 times or so almost like a compulsion. It almost seems like her forgot she just did this. I would turn my head so she would kiss my cheek, but she grab my head so she could kiss me on the lips. It was very strange and hard to explain the creepy, this-isn't-normal feeling that it gave me.  I read somewhere, that one type of seizure includes simple, repetitive movements. I don't think it was really a seizure or anything like that. It was just odd and when it comes to Hannah, it better to have a record and to see if a pattern exists then to dismiss it completely. Either way it breaks my heart to see her have these difficulties.