For over two weeks we've enjoyed little to no seizure activity; just as we were getting comfortable and finally letting our guard down a bit, the darn DS monster had to sneak back into our lives.
About a week ago Drake started experiencing an increase in sleep disturbances. Started out with him waking super early (between 3:30 and 4:30am). He'd play in his room a bit and finally settle down and fall back asleep an hour or two later. Then he started waking more and more during the night; sometimes only for a few seconds, other times getting up and wandering his room for several minutes. Then he started screaming out in his sleep; a horrible, blood-curdling, "i'm in pain/distress" cry; it would only last a few seconds and he never seemed to actually wake.
Then we noticed the eye blinking begin. We've seen this randomly in the past; but on Saturday it literally went on all day long with only a few brief 10-20 minute breaks. It wasn't affected by activity or rest; he continued on with his normal activities but was very slow to respond, seemed exceptionally defiant and sometimes during periods of more rapid blinking he'd stand motionless for a second or two. I was pretty sure we were seeing some sort of seizure activity but thought maybe it was a tic or an eye problem of some sort instead; but after consulting with our "Dravet family" online, I was 99% sure it was seizures.
About a week ago Drake started experiencing an increase in sleep disturbances. Started out with him waking super early (between 3:30 and 4:30am). He'd play in his room a bit and finally settle down and fall back asleep an hour or two later. Then he started waking more and more during the night; sometimes only for a few seconds, other times getting up and wandering his room for several minutes. Then he started screaming out in his sleep; a horrible, blood-curdling, "i'm in pain/distress" cry; it would only last a few seconds and he never seemed to actually wake.
Then we noticed the eye blinking begin. We've seen this randomly in the past; but on Saturday it literally went on all day long with only a few brief 10-20 minute breaks. It wasn't affected by activity or rest; he continued on with his normal activities but was very slow to respond, seemed exceptionally defiant and sometimes during periods of more rapid blinking he'd stand motionless for a second or two. I was pretty sure we were seeing some sort of seizure activity but thought maybe it was a tic or an eye problem of some sort instead; but after consulting with our "Dravet family" online, I was 99% sure it was seizures.
The blinking continued on Sunday. I called the neurologists office this morning to find out how I could get video clips to him for review; I was told his nurse is out all week but she would call me Monday with her e-mail address. Tonight however, the blinking progressed into a definite seizure - though quite different from seizures we've seen in the past. The seizure lasted just under 4 minutes and then he slept for an hour, woke long enough to take his meds and call grandma and grandpa to say hello and then went back down for the night.
Guess I'll be back on the phone with the neurologist's office in the morning to tell them Monday isn't good enough - we need his input NOW!
That's the lesson with Dravet - don't ever get comfortable, because just when you do, another curve ball will be thrown your way.