2.16.2009

just a little sleep

Sleep and Trevy have not been a happy combo since...



oooooooh...



around the time his spasms first started.



In fact...the loss of our perfect little 8-8 sleeper was a clue. Only we missed it. Having never heard of Infantile Spasms.


But ever since we did...getting a full night's sleep has felt a bit like chasing the end of the rainbow. Some nights we think we're closing in. Only to find the next night...and weeks...filled with wakings. A good night these days is 3 wakes. A bad? Ever 1/2 hour.



We've tried chewable Melatonin. Really hasn't helped that we've noticed.



On the recommendation of a pedi neuro at the FDA hearing we tried Benadryl. No charm there either.



We've tried co-sleeping. Which started out promising. But anymore half the night is spent trying to catch a very sneaky toddler before his pitter-patter feet wakes the rest of the house. He's lightening quick too. It's not unusual for the midnight hours to find Jonathan or I stumbling around to find a toddler shadow darting the halls. Looking for toys. And giggling.



I've never had the heart to let him cry-it-out. He's the baby. Which makes me mushy enough. But the baby has seizures too! What's a mushy mommy to do with that?



But honestly...we're at the point that we're just completely. Utterly. Exhausted. We can't keep running on strong coffee & no sleep. I'm very cranky sleep deprived. Which is precisely why during each of our kiddos newborn months...I always swore off another!


Anyway...


Dr. Neuro prescribed Klonopin. I've had the script sitting on my desk for weeks now. I'm not sure why I don't want to fill it. I just am. I hate the thought of medicating Trevy with something so potent.


A part of me keeps wondering if this isn't just a typical toddler struggle. Although our (not so typical) toddler also happens to be on Vigabatrin. Insomnia is a side-effect. And I will say...the wakings have intensified as we've upped his dosage. Plus we're completely off the Zonisamide now.


Ugh!


This post is turning out to be really really long. I have a wordy bent. But especially when I'm groggy. I can't remember the last time I wasn't groggy.


So all this to say...


We finally bought those slow-release Melatonin tablets which I was convinced Trevy would never swallow whole. I have no idea if or how it'll work. But I can tell you he swallowed that pill just fine! A big straw swig of apple juice makes the medicine go down! And sleep would make most delightful day!

5 comments:

Marissa said...

Marissa's been on generic klonopin for some time. Really no nasty side effects to speak of. Doesn't help with the sleep so much, but it can always be worse...

Sophie's Story by Elaine said...

Hope you all get a good night sleep tonight.

Melanie said...

We have the same problem with Daniel since starting him back up on the Vigabatrin. Nights awake.....just suck. We use to have klonopin but it seemed to leave him like a wet noodle, even the day after, just sat there like a wet rag, not muc too him when we used it, and Dr. C recommended we take him off it pretty quickly. Sometimes same drugs effect kids differently. He slept 22 hrs a day and cried the other 2. Just wasn't the one for us. HOpefully it will work for you guys. Have yu tried Choryal Hydrate (sp???) that works ok but not suppose to give it every night.

JSmith5780 said...

AS I was reading, I was thinking Klonopin. Then I read further. I hope the time release melatonin works (did you get a Medi-Straw?). If not, contact Shawna, Cody's mom, I think he's on something different for sleep. I know I have heard of something other than klonopin and chloral hydrate. Good luck! (says the mom who went to bed at 8 last night since my kids have been up a lot lately too!)

Shanna Grimes said...

wow! A couple days of minimal sleep & I am like a zombie psycho. Hope u get some zzz's soon with the addition of the slow release melatonin. There is a an online chat going on right now about melatonin & autism that I was just invited to. I admit, I haven't read up about it yet.