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Here are some suggested organisations that offer expert advice on SN.


(25 Posts)
sarah293 Sat 09-Aug-08 12:02:24

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TotalChaos Sat 09-Aug-08 12:11:29

well I don't want this to go unanswered, but don't have anything more constructive to say than a gormless dunno to any of this. does melatonin work for her at all? just that is going to be less heavy duty than other meds you have been using so you wouldn't have to worry about how often you give it.

sarah293 Sat 09-Aug-08 12:13:38

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TotalChaos Sat 09-Aug-08 12:16:33

oh shit, sorry I made that suggestion. are there any US sites/organisations that are more helpful than scope?

Hecate Sat 09-Aug-08 12:27:09

I know nothing about cp, but couldn't not post. It must be awful to not know. sad could it be pain from muscles, - or could it be pure frustration on her part, if she is unable to communicate?

Nat1H Sat 09-Aug-08 12:53:15

Try giving her tense muscles a massage with sage oil (in a carrier of almond oil or something similar). Or give har a bath with some dried sage in it (wrapped in a pillowcase or such like). The water will go a murky brown colour, but it should help to relax her muscles a bit. My son has CP (not as severe as your DD) and he attends a conductive education centre. They bathe them and massage in this way and it helps most of the children there, no matter how affected they are.
Good luck! (Alternatively, buy some ear plugs grin)

sarah293 Sat 09-Aug-08 13:42:55

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Raine3 Sat 09-Aug-08 13:51:36

I find that my DS who has Dysonic/four limb Hyp CP sleeps much better if instead of winding down, I wind him up, you know like laughing & tickling then when I take him to bed I jump up and down on it (as fat as I am) & then I turn the lights out and play with some flashing toys that are hanging on the bed .... it's almost as if that last spurt of energy wears him out ... and gets him in a good mood.

I know your DD is a lot older than my DS but is Phenergan (that they give to toddlers) any good .... either way I hope you manage to find a solution x

Raine3 Sat 09-Aug-08 13:52:50

I thought lavender was the sleeping aid ? and amethysts under the pillow ! grin

TotalChaos Sat 09-Aug-08 13:59:50

yes, sage would appear to be contra-indicated for epilepsy:-

(about as credible and authoritative link as I could find among the herbal medicine sites)

anonandlikeit Sat 09-Aug-08 16:15:56

have you spoken to a sleep nurse at all?
I know scope can be a bit hit & miss but they helped a friends ds with similar lack of sleep & screaming issues.
They ended up getting a hammock via scope for him to sleep in.
If you don't want to use scope ask your OT if they know of a specialist sleep nurse.

sarah293 Sat 09-Aug-08 16:20:22

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anonandlikeit Sat 09-Aug-08 16:27:15

I can't understand why Cerebra hasn't more info, as they are supposed to be there to support brain injured children!

Shame the schools are on holiday as your local sn school must have soem useful advice - or the parents, physios & OT's.

DS2 is at ms school but have still used the sn schools for advice!

Can your DH get up tonight & try to give you one complete nights sleep, you may need cotton wool in your ears, it may be as you suggest & the muscles causing her discomfort.

sarah293 Sat 09-Aug-08 16:37:34

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anonandlikeit Sat 09-Aug-08 17:02:12

OK i've run out of ideas other than take big glass of something strong & go to bed NOW!
Let DH deal with everything & give yourself some rest, you can't look after your dd if you don't look after yourself.

Do to bed NOW & leave instructions that you are not to be disturbed.

sarah293 Sat 09-Aug-08 17:57:50

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MannyMoeAndJack Sat 09-Aug-08 18:17:28

I have no personal experience of cp, so not sure what to suggest...

However, I once watched a programme on TV that featured various families and how they coped with their SN kids. One of the families had a 4/5yr old girl with a genetic condition that had left her severely/profoundly disabled. The mum explained that once each week, she sedated her dd so that she (the dd) would get a really long, restful sleep. Could this be an option for you and your dd?

MannyMoeAndJack Sat 09-Aug-08 21:14:11

Also, I seem to remember reading that David Cameron has a carer stay overnight with his ds three nights of the week. Do you think SS could provide somebody to do a similar thing for your dd?

TeacherSaysSo Sat 09-Aug-08 21:18:53

riven, sorry I don't know how old your daughter is...but if she is only crying at night when she is lying down could it be reflux?

magso Sat 09-Aug-08 21:49:32

Riven - have no practical advice , but can identify with extreme emotions when severely sleep deprived! We are not IMHO designed for longterm sleepdeprivation! I keep thinking your family needs the support of specialised respite both for the hopefully experienced medical care for dd and to allow rest for you. Is some sort of respite likely? I have heard that siblings needs take higher priority than parents when prioritising limited resources! If dd seems to be in pain, is she allowed any pain killers? Can her epilepsy specialist advise?
Hope you have a better night tonight!

MsDemeanor Sat 09-Aug-08 22:04:04

OH you poor thing. It sounds hideous. If drugs work, I'd use them, really I would. Nobody can go on as you have done.

Nat1H Sun 10-Aug-08 08:04:27

Had no idea sage was not good with epilepsy. Thank God I haven't used it for ages!

Nat1H Sun 10-Aug-08 08:12:41

Come to think of it, the last time we did this (before we knew DS had epilepsy), he had the worst night's sleep ever. Maybe there's a link?

sarah293 Sun 10-Aug-08 08:42:29

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streakybacon Sun 10-Aug-08 09:32:03

Sorry if this might be too obvious and it's been tried, but I know your daughter is NT so wondered if she might respond to social stories to explain why you need sleep and to alleviate any fears she might have about going to sleep herself. Her being non verbal would make it difficult for you to know whether she's understood but it may help to calm any irrational fears she may have.

Sorry there's been so little practical help and advice for you from the authorities riven. Seems it's just the way of things sad

BTW, lavender oil mixed with pure lemon oil is said to work like knockout drops. I use lavender oil for myself and my ds often has a lavender shower or burns a candle if he's stressed.

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