The bad news.
We've been having a lot more seizure activity lately. Not the big scary grand mal kind or even the throw him to the ground head drops--but more staring/absence seizures and definitely more jerk/scare him out of a dead-sleep seizures. Some are so powerful that he screams out and sits straight up, scared out of his mind. If he was anywhere near the edge of the bed, he'd fall off the bed; completely confused and scared. But, I'm next to him and these seizures wake me too. I pat him on the back and tell him it's ok and then he cuddles back into me and falls back to sleep.
Night terrors? Not likely.
I've been watching videos online of other kids and their types of seizures--and this is definitely one type of seizure. Picture if you were sound asleep and that feeling you get like you're falling and your arms and entire body react suddenly and you're startled awake. This happens with the Doodle at least 5 times a night, sometimes more.
I stop and think what kind of true sleep, in the form of actual restful sleep is he getting. He's always tired. And the dark circles under his eyes are getting worse and worse. I even bought a Dreamcatcher the other day and hung it on my bed. The Native Americans believe that the legend that good dreams will pass through the center of the Dreamcatcher and the bad dreams will get caught in the outer part/web. At this point, I'll try anything- superstitious or otherwise.
Along with the restless sleep, I've been jerked out of my denial that things aremight not be ok and that the medicine might not be working like it used to...and I think it's time to got back to UCSF for another sleep study if we have to. Oh, I am not looking forward to that one. And also to bite the bullet and find another DAN! Doctor to get the testing I wanted done last year when things went so very wrong with the last DAN! Doctor I chose.
So tonight after his bath and just before bed we prayed.
We both got down on our knees and we prayed to God that the Doodle will be ok. I'm not asking and praying and begging for a cure, I just want him to be OK. As for the Doodle, he was just happy that I was next to him doing what he likes to do:putting my hands together and smiling and telling him it's going to be ok..