One Night with Dravet Syndrome

 Posted by Lauren Sparks on September 23, 2013 at 3:20 PMDelete 
I went to bed at 10 last night.  That is a little earlier than usual (not much though), but my husband was out of town on a business trip and I knew that I was parent on deck for 4 nights in a row.  Shelby has been having a lot of nocturnal seizures lately.  Many more than usual.  I had her scheduled to see her neurologist this morning to discuss the changes and any options we might have for changing medications, but he had his own family emergency and had to cancel the appointment.  I am still waiting to find out if we can get her in to see someone else quickly.  Her "new normal" pattern has been to show up in our room between 2 and 4 am, either get in the bed with me while Chuck goes to the guest room, or Chuck takes her with him to the guest room (we alternate).  Then she will proceed to have from 2-6 seizures before our 6am alarm to get ready for school.  Dravet must have a sixth sense that I am a single parent this week, because Shelby showed up in my room at 11pm.  I wish I could have seen into the future and gone to bed at 8:30 after tucking the kids in bed.  After getting her back to sleep with me, she began to have seizures.  She would stiffen, jerk and shake to an upright position, then take several minutes to relax enough to lay back down.  Then she would talk and ask to get up and play.  I would hold (a.k.a. cuddle) her down until she would dose back off.  Then it would start all over again.  14 times this happened last night.  I can't begin to tell you the misery.  Frustrated with a talking child and a full bladder, I got up to go to the bathroom at one point and couldn't believe it was only 2:15am.  It felt like I had been battling this monster for hours and I wasn't sure how I could continue to do so for another 4.  I yelled at Shelby - for something that she has no control over.  It's not pretty over here when I'm exhausted.  Dravet 1  Mommy 0.  I wish I could have read her mind.  Was she so resistant to sleeping because she KNEW that as soon as she dozed off, another seizure would come?  Or did her brain just feel "wired" and she thought it was time to be up?  I kept trying to get her to sleep, knowing that we both needed it and hoping that this time, no seizure would come and we woud both rest.  About 4:30, I felt like I was starving.  It was no where near breakfast time, but I had been up for hours.  I considered getting up for some Cheetos.  I thought better of it.  That wouldn't help anyone.  Reason won out.  Dravet 1  Mommy 1.  I continued the fight for sleep.  I finally gave up my quest  about 5:45am.  I let her get out of bed and leave the room.  And I slept - uninterrupted - for 10 whole minutes before my alarm went off to start our day.  And even though the score reads 1 to 1, I assure you that there are no winners here.