Sleep is for the weak...

Whoever came up with that phrase had serious issues.


Some of you might have stumbled upon my desperate plea for help on the IS board. Some of you reading may have heard me on the phone. Or had the pleasure (not) of witnessing it firsthand.



THIS BOY IS CRAZY!!!!


Thank you, Felbatol. Thanks a ton.


No, really, I forgot what sleep deprivation was like. I needed a reminder.



All joking aside. This boy does not want to sleep anymore. I have no choice but to blame, you got it, Felbatol.

My trusty standbys and old sleep tactics were no match for Austin and Felbatol last night.

While Chad was waking at 4:30 am to start his day...

I had just ended my previous one.

I've long suspected that he was programmed with some type of sensor that alerts him when I'm drifting off to sleep. He can be as still as the night, but as soon as my eyelids start getting heavy and the groggy state sets in...the stirs and squeals begin.

Case in point...last night.


My poor little restless boy. I had one of those breaking moments around 2 am. That nasty anger brewing that results from a weary mommy on the brink of a meltdown. Not angry at Austin. No way. Sad for Austin. Angry at life in general. The kind of moment that reminds me of what we are living. A life where I am so desperate for seizure relief that I have subjected my baby to this hell. Felbatol.

A vivid reminder of the no nap/no sleep days of ACTH.

Counting down...Three and a half days until we reach our so-called treatable dose. Then maybe another week or two after that to know whether or not this could possibly be beneficial for Austin.

Something's gotta give here! Either these side effects must subside...or we've got...I mean GOT to find a remedy.

I did get a good suggestion (thanks, Elaine). It's called Neurontin. I read up on it. Not a technical sleep aid, but typically does the trick. It's got dozens of uses (most being off-label uses). It can be prescribed for anything from the treatment of seizures, to bipolar disorder, to treatment for withdrawal symptoms.

Of course, I don't want Austin on any more meds than necessary. So, I will keep up my sad attempt of getting him settled the old fashion way for now. For now being the key words here. Too many days of this can't be healthy for either of us.

Coasting on fumes here!

Hoping...hoping...that these are the type of side effects that disappear or lessen over time.

He's not just not sleeping. He's gets in a slightly agitated state. He's biting his fists with ferocity again. The callous that was finally improving is constantly red again and spotted with baby teeth marks. He's been moaning and crying at times. For those of you that really know Austin, you know he's always been a go with the flow, laid back kid -except, of course, those newborn days . For the past year or so, he's rarely been the type to cry without an obvious cause. Not so now. This is not the baby I've grown accustomed to. My days of swaddling and shushing and rocking have been gone for over a year now. All of my old previous tricks are being squashed now. DOA.

Maybe if he doesn't adjust to the meds...I'm hoping I will soon. Re-adjust to our new sleep schedule (or lack of). I lived through life with a newborn. Lived through ACTH. Vigabatrin. I just need a refresher I guess.