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cant stand it any more

(22 Posts)
sarah293 Thu 15-Jan-09 15:16:41

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kitkatqueen Thu 15-Jan-09 15:21:21

Hiya In what way is she special needs?

kitkatqueen Thu 15-Jan-09 15:24:55

I know 2 children who suffer from night terrors - have you heard of this?

Woooozle100 Thu 15-Jan-09 15:25:08

cramp? boredom? innability to move self into a more comfortable position? Innability to sit up and bring up wind? reflux? Not being as tired due to not moving about much in the day?

dunno. These are the things I go through when my dd has her yampy night attacks. Often it is wind related with her

sarah293 Thu 15-Jan-09 15:26:30

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sarah293 Thu 15-Jan-09 15:27:14

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Woooozle100 Thu 15-Jan-09 15:32:06

sorry yr feeling so tired and cack. Dyou have any means of catching up on some sleep at all? Any respite overnight or in the day so you can get a bit of kip then?

Can she use any kind of big switch device? That's got bugger all to do with sleep sorry..

kitkatqueen Thu 15-Jan-09 15:41:22

Sending you massive hug. You have just diminished all my problems to zero.

I know very little about special needs so I apologise in advance if I sound stupid.

Is it possible that she is bored in bed?

If she is normal intelligence but can't communicate / express herself could it just be pure frustration?

Have u tried the colour change bears? Someone told me that colour therapy can be helpful / v calming?

alfiemama Thu 15-Jan-09 15:57:21

I have nothing to say but, "shit", I think this helps sometimes.

Its like men have this inner need to try and fix things, when all we want to hear is, "shit", in other words we cant fix it but we can be there to let you sound off and be a shoulder to cry on. Hope that makes sense.
[Hmm]

amber32002 Thu 15-Jan-09 16:07:43

((((((((hugs)))))))))) and prayers

josey Thu 15-Jan-09 16:15:32

Riven dont really know what to say...I dont think you are whining or being unreasonable....Im sure you get Fk'd off sometimes as well with suggestions when you know nothing will help, because if it would you would have tired it.

What does the Paed say about it? mine asked me to tell her is DD started this as it can just be the case as its part of the brain that is damaged that causes it. She didnt say what they would do if she did start.

Like EJB DD is usually reflux.

Well done for not thumping that woman btw I would have split her shins with your DDs wheelchair see if that got her thinkinggrin

If I had a magic lamp I truely would wish for nights to be easier for you.

Cyber Tea and Chocolate cake being sent from me x

sarah293 Thu 15-Jan-09 16:44:04

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feelingbetter Thu 15-Jan-09 16:45:55

Oh Riven, I am the queen of whiners (as you know coz you always make time to listen to me) and you are definitely not a whiner or being unreasonable.

I think it is a cruel, cruel thing to have such a bright girl with a body that won't work for her. I can see it in DS (and he really has quite a remarkable level of movement, for which I am eternally thankfull) but he gets so frustrated and cries when he tries to get about, roll over etc and can't. Given that he is way behind developmentally and we have no idea about his intelligence - if it frustrates him, it must surely be more so for your DD. Are things moving forward at all with her communication aid?

Could it be wind or tummy problem? Is it worse since surgery?

I wish I had some answers, it must be so frustrating for you both. I know you hate to leave her, but can you get a break for a few hours? If not to sleep, then to get out for a bit?

As far as I can see, you don't whine, winge or rant anything like enough! Does you the world of good, I think, to say life is f*ing shit sometimes and have a good wallow and sulk.

I won't give you any more of my words of wisdom coz you'll find the strength, you always do!

Will send a very rare hug though, and a cup of tea and some cake. Hopefully if things settle down a bit, I'll follow it up with some real ones and take that trip over the bridge.
Take care xx

saint2shoes Thu 15-Jan-09 16:46:40

riven it is cp pure and simple, I firmly believe that dc's like yours and mine, do not have the on/of emotion switch, so they can't stop like an nt child can.

saint2shoes Thu 15-Jan-09 17:15:53

Riven check TTR I have posted something ver un pc that will hopefully make you lol

cherrymonster Thu 15-Jan-09 17:39:02

riven- sending lots of hugs your way. i know i complain about my kids loads, especially ds2, but none of my kids are as severely disabled as you dd, yet i hardly ever see you complaining about her. chin up sweetie, i think they should rename you saintriven for all you put up with xxxxx

TotalChaos Thu 15-Jan-09 17:57:45

sorry the nights are so grim at the moment. hope you both get more sleep tonight.

glitteryb6 Thu 15-Jan-09 20:27:40

right with you Riv! ds is currently waking every hour throught the night at the mo, so i get about 3/4 an hour sleep at a time, im like a fecking zombie and my friend told me last night that i looked like sh*t....helpful! hmm

neuro said it wont ever be "fixed" but may be "managed" from time to time with drugs, only problem is the persistent puking means he's not putting on weight so we cant up his drugs....grrr!

bullet123 Thu 15-Jan-09 21:50:36

It must be so upsetting for both you and your dd Riven .

RaggedRobin Thu 15-Jan-09 21:58:16

can't imagine how knackered and stressed you both must be. wishing you good sleep.

sarah293 Fri 16-Jan-09 08:32:32

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glitteryb6 Fri 16-Jan-09 09:25:22

ds has the vibrating knee caps when in his supported chair but i dont think ive ever noticed it at night, its always been dystonic muscle spasms at night with him since he was about 18 months old.

he would do it in phases like sleep for two hours, spasm for anything from a few minutes to an hour or so then sleep for two hours then spasm etc

we tried baclofen, it was rubbish and made him more floppy, we ended up on quite a high dose but as his trunk was floppier he had to work his arms harder which made him spasm worse!?!

we tried melatonin but it wasnt much use as he never has a problem falling asleep only staying asleep, we tried the slow release tablets but as they were huge we had to crush them so they werent really slow release anymore hmm

we used diazepam for a bit but after a year it wasnt working so well it only lasts about 8hrs in the body but nitrazepam which he is on now lasts for 12hrs. it worked well for ages, especially everytime we upped it we would get a week or so with sleeping right thru....bliss!!

his spasm episodes dont last as long now, sometimes they just wake him and all he needs is a position change to break the pattern IYKWIM? only thing is they are becoming more frequent now, every hour which is making me majorly tired!!

he has been on the max dose for his weight for about a year and it wasnt working so neuro chucked the hypnotic Triclofos into the mix, which helped for a bit but hes on the max of that too now.

cant up any of his drugs till he puts on weight which he wont do while hes puking and if its the dystonic spasms that are making him puke then he wont stop till we up his drugs which we cant do till he puts on weight....and so the viscious circle goes on....

does seem to be the dystonic spasms as the dietician changed his milk to nutrini energy as it is 1.5cals/ml hoping he might gain weight again.
we were concerned that it would make him sicker as it has milk protein in it, and we could never figure what was making him sick...dystonic spasms/milk protein intolerance/reflux...the pepti was digested milk protein (yuk!) so easier to tolerate but he started the nutrini energy yesterday and hasnt puked with it so far....cows milk used to come out like a fountain grin

anyway ive wittered on as usual, basically i think dystonic spasms are the root of all ds's problems, sleeping/puking/poor weight gain etc

neuro said it'll never be "fixed" but will be "managed" from time to time with drugs, which was, i think, his way of saying "tough, just deal with it!"

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