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Im so blooming tired.............

(8 Posts)
lourobert Wed 06-Aug-08 20:01:41

and I pray that ds sleeps tonight.....but I know we wont. Im physically tired as he doesnt sleep but im also tired of thinking about appointments and searching the internet for various bits of equiptment and making phonecalls to O.T's and physios..............so tired of it. wish it would go away but I know it wont!!!

Hope I find the energy for tomorrow!

sarah293 Wed 06-Aug-08 20:04:39

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lourobert Wed 06-Aug-08 20:22:04

melatonin worked wonderfully for a while, we had a break and re-introduced it but it seems to make him waking up screaming about hald an hour after going to sleep. We were also prescribed phenagan once a week, again this worked well for 2 weeks then just made him worse.

The only thing that seems to remotely make a difference is Medised, so he will have some tonight as I will not be getting up for work if I dont get at least 6 hours!!!!

Lack of sleep is bloody torture isnt it.

Im sure Ill get to the point were im totally tired of chasing appointments. Its just like my every waking moment is consumed with searching for equiptment or sensory toys or whatever for ds, drives me nuts sometimes.

With ds being my one and only I often wonder what people with NT children think about all day grin

sarah293 Thu 07-Aug-08 09:22:07

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lourobert Thu 07-Aug-08 09:27:24

I ended up giving DS medised and he had an ok-ish night which is the best I can hope for. His dad and I have recently separated and he has him for the next 2 nights and although i miss him Id be lying if I said the sleep wont be good.

I know exactly what you mean about the crappy epilepsy. Things would be so much simpler if ds just had Williams without the IS on top....off to see neurologist later, wonder what he'll tell us?

SOrry you have a crap night Riven- sleep deprivation is torture isnt it, I will be hoping that tonight is a better one for you.

When are you at Brainwave next?

sarah293 Thu 07-Aug-08 09:32:32

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lourobert Thu 07-Aug-08 13:46:09

We are heading back there soon but to be honest we have been crap at his programme over the past few months what with everything going on......!

He has been med free 6 months and now more seizures- no hyps or seizure activity on EEG but background isnt completely normal. Had what we thought might have been 2 seizures couple of weeks ago but neuro has dismissed these as being seizures. So I guess the IS is cured, guess its already done the damage though

sarah293 Thu 07-Aug-08 15:33:45

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