This is what a Doodle Bug looks like on anti-seizure medicine bouncing off the walls--around midnight because the anti-seizure medication which is a sedative has the opposite effect on our already ADHD bad sleeper. Our poor drugged out baby.One thing our entire family shares is dark circles under our eyes from lack of sleep.
The Doodle has never been a good sleeper since the day he was born. He would never sleep more than an hour or so and do that startle jerk thing you do when you feel like you're falling when you first start to fall asleep...well, he would do that all night long. Naps were 20 minutes. We used to call him the cat napper. Looking back and after talking with Doctors, we have determined that those were some kind of a seizure.
Flash forward (or is it backward?) to last January. The Doodle's seizures began while he was sleeping. Always while he was sleeping, these were the grand mals--the big ass kicking ones and they always happened between 4:00 and 8:00 am.
Meanwhile, still a bad sleeper. Still wakes up startled and scared all night long. But now that I am watching and looking for seizure activity I can tell and it was confirmed by our nurse that these weird wake up screams in the middle of night ARE definitely a form of a seizure. He startles himself and jumps out of skin, then he cries for a second or yells, his body stiffens and his eyes are wide open but his eyes are kind of rolled back in his head and you can't wake him or get his attention. His breathing pattern also quickens. These things only happen when he's sleeping and I can't detect what kind of seizure they are or how long they last unless we go back to Stanford for another sleep study EEG and actually record them.
When the Doodle had the last sleep study EEG in May, it was determined that he had seizures all night and all day long. I was supposed to hit a button when I saw what looked to be a seizure. There were a ton of seizures that I couldn't tell were seizures and I never hit the button on those.
So scary.
Because of the seizures (and previous sleep apnea) the Doodle sleeps with us. And since he refuses to go to sleep until after 10 or 11 pm, because he's all jacked up on antiseizure medicine, no one in our room is getting any sleep. I've been groomed now to sleep with one eye open; watching and waiting. I've only had 4 nights of sleep completely Doodle-free. Oh what I wouldn't give for one night in a hotel in a Tylenol PM induced sleep coma; where I could sleep the entire night without waking or worry. Real REM sleep. Sigh.
Thank goodness only one of us operates heavy equipment, at least Jim can sleep through most of the Doodle's outbursts.
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I know this is an old post, but I found your blog and was looking through. This one especially stands out to me because I too am living this nightmare. My 3-year-old son Andy was diagnosed at 18-months with the extremely rare mitochondrial disorder Alper's Disease and Epilepsy with hard to control and mostly random seizures is a side effect. Andy had his first grand mal seizure in March of '08 which we passed off as a random occurance but he went on Phenobarbital as a precautionary just in case. The following June he had another and was was diagnosed with Epilepsy and put on Trileptal and Depakote as well as kept on Phenobarbitol. The following August his liver started to fail and we spent the following 6 weeks in two different hospitals and he, through biopsies, was diagnosed with the Alper's. Seizure's and seizure meds are as normal as eating to us. You probley understand the significance of carryin Diastat around every time you leave the house. Like you, I haven't slept a ful night sleep since Andy had that first seizure two years ago. Andy is a night owl as well and waits to go to bed (with us) until 10pm or later unless I get him to sleep by rocking him before his daddy gets home at 9pm. Oh and how many nights have I wanted to leave Andy and his 1 year old sister in someone else's care so my husband and I can get a hotel room, enjoy actually sleeping NEXT to each other, and sleep off a mildly induced coma. Sigh...I would probley need a week of those to catch up and get to where I wasn't waking up every hour to check on Andy. It would be so strange not to sleep with some body part touching him at all times so that if he goes into status I will feel it and wake up. And yes..my husband sleeps through most of it too! lol Feel free to contact me anytime okay!
ReplyDelete-Leah
my2littleatwoods@yahoo.com