June 12 email regarding seizures

Email sent June 12:

Megan has been having a difficult time sleeping lately.  It started about 6 weeks ago with her waking up multiple times a night for a few seconds and then going back to sleep.  It progressed to her also waking up once or twice a week and staying awake for 3-4 hours at a time.  The past 2 weeks she has been having difficulty going to sleep (she would fall asleep and immediately wake up crying) and then also waking up for several hours.  Four days ago she started waking up at the 2.5 hour mark and screaming/throwing herself around her bed and then never going back to sleep. 

On Sunday night I was able to rock her to sleep at 5:30 am and she slept for 30 minutes before my moving around woke her up.  Monday night Will had the honors of staying up with her all night and last night it was my turn again.  She woke up at the 2.5 hour mark (9:30) and was still awake at 3:00 am.  She was going through cycles of trying to go to sleep and just flipping out.  We were trying to get her to work through it on her own so that is why I waited so long to intervene.

At 3:00 am I got Megan up and brought her downstairs to try to rock her to sleep.  I successfully got her to sleep at 3:45 am and what followed was the most rewarding and difficult thing I have ever done.  The instant Megan fell asleep she started twitching in her arm and it woke her up.  I was able to get her back to sleep by continuing to rock her.  Her arm was twitching a little bit and then her leg and then her head would twitch back and forth.  This continued for about 30 minutes until she had a big incident.  She gasped and then her entire body went stiff and jerked for 3-5 seconds; and then she was awake.  I was able to reposition her so she was comfortable and rock her back to sleep in just a couple of minutes and then it started all over again. 

I knew what was happening.  It was obvious what had been happening to her for who knows how long.  She couldn't get to sleep because her body would twitch and wake her up.  She couldn't stay asleep once she had a big jerking episode and then once awake she couldn't get back to sleep.  Our daughter is having seizures in her sleep and they are keeping her from getting the sleep she needs. 

I managed to get her 1.5 hours of sleep in my arms.  I felt honored to be able to help her get some of the sleep she needed; and yet her seizing in my arms was the most difficult thing I have had to endure as a mommy.  My instinct was to try to hold her tight so she couldn't jerk around and to rock and rock and rock so that maybe she wouldn't twitch at all.  At 5:30 she jerked awake and daylight had started to show through the window we were sitting by and she decided it was time to get up for the day. 

I took her up to our bed to lay down with Will for a little bit while I filled him in on what had just happened; and then I laid down to get 2 hours of much needed sleep.  I don't remember ever being good at pulling all-nighter's and 38 years old is definitely not a good time to try it again. 

First thing this morning I called her neurologist office and they moved her EEG appointment from Monday to this afternoon.  They originally did not think that seizures would be what was happening since Megan isn't having any while awake but they scheduled the appointment just to be sure. 

I will update everyone when I have more information but we in the mean time we covet your prayers for Megan and for our family.