Tuesday, December 15, 2009

A flicker then - snuff!

I felt a flicker of hope last week. The melatonin seemed to be doing the trick for Sam. He was sleeping beautifully. I began to imagine the possibilities - an overnight at my mom's or some other place. A vacation is still out of the question as Sam has no appropriate interests and he would run away if we were out in public but an overnight somewhere? With Sam able to fall asleep in a strange place? Not waking up and trashing the place and keeping us (me) up all night? The thoughts were uplifting. If we coulld get that far at 4 1/2, where might we be at 8?

He took a night off the melatonin on Saturday. He slept pretty well. I thought maybe his circadian clock had been reset. Sunday, he did not do well at all. Monday night I gave him the melatonin again. It didn't work. He was up from 2 - 4:30 hyper as ever - bouncing on his bed, yelling, laughing. He woke the baby multiple time and eventually he ran out an had to be taken downstairs. Neither Sam nor baby want dad when they wake at night so the burden is not shared. Light snuffed out.

I am giving him a higher dose tonight. If it doesn't work I am going to harass the neurologist. I am making it through work on very little sleep but I can't do this long term. I am wiped out, teary, and generally fed up.


Stranded said...

I have been following your melatonin posts (the last two).
Listen, my knowledge of autism kind of starts and stops at my son so I won't say do this or that. BUT my kid is highly dysregulated as well. i.e. he needs to physically move, bounce head on pillow, hit head againts my arm if he is just standing next to me, move his legs when sitting at table etc etc. Pace at night, come in to our room and do laps of the room blah blah. We don;t do any melatonin. He started sleeping through the night after 1)I started to address his need for physicality as much as I could during the day. We have a very very physically active day. One that would wipe out a regular kid. As a result my son now eats like a teenager as he burns so much energy. But HE SLEEPS. If he wakes, he goes back to sleep. 2) We do co-regulation exercises with him to help him learn about self regulation through us. We do this with RDI.

I don;t know about your kid that much or what your days are like. But this is what helped us. God bless you. I hope you start getting a few more peaceful nights. They aren't all peaceful at our house, but are now more often than not. He is still up early, but its so important to get at least 5-6 hours straight you know.

MJ said...

You might not want to throw the towel in on melatonin quite yet. In my experience with my two older daughters, it has been a great help in getting them to fall asleep. My youngest, on the other hand, doesn't seem to have any trouble with falling asleep. Giving melatonin is a longer term thing and it isn't going to work every night but, in the long run, it does seem to help - at least for some kids.

The downside to melatonin is that, while it is helps you fall asleep and sleep more restfully, it does not keep you asleep. We have had countless nights where the twins will go to sleep nicely only to wake up at midnight and stay up for several hours.

Then there are the phases were for weeks on end one (or both) of them will be up during the night every single night....

I have been told that you can try giving more melatonin when they wake up during the night but that hasn't ever worked too well for us. But who knows, it might work for you.

Just my 2 cents, for what it is worth.

Stranded said...

Emma. Thanks for your comments :)

Yes we have off and on nights with Khaled. The only thing consistent about his autism is that it is consistently unpredictable.

Ted and Lori said...

(real quick like: you want to venture across the river to have coffee or dinner or a frolic in the park? send me an email: ourownrooney at gmail dot com).

KAL said...

Emma, thanks for commenting over at my blog. It seems you are in a similar boat with the middle-of-the-night parties. We have been giving melatonin for over a year and the dose has always been the same and very effective in getting J. asleep. It just never, ever has KEPT him asleep. The clonidine has been a work in progress. We've adjusted the dose on that w/neurologist and just had our first night of sleep. Hang in there. Hope the EEG went well.