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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

sleep help

26 replies

Phoenix4725 · 03/05/2009 04:00

ok i have had enough tried calling paed about ds lack of sleeping but all I get is were disscuss at his next review which is still approx 2monthsaway.And now past the iron bar level

Im tired and crabby , where else coud i but melatonin to to try and would it be safe and how to work out dosgae

thanks

OP posts:

amber32002 · 03/05/2009 07:46

Don't have a clue about the melatonin but have you tried the weighted blanket thingy?

Original poster

Phoenix4725 · 03/05/2009 08:33

yeah a friends loaned me one before I brought one, but no differance sadly

OP posts:

5inthebed · 03/05/2009 09:04

Phoenix, do you have melatonin or are you thinking of getting it? I think melatonin goes 2,3 then 4 mg. Not sure its wise to give it anyn higher without consent from docs.

Original poster

Phoenix4725 · 03/05/2009 09:09

Melatonin no we dont have it paed wants to wait and see if his sleep issues resolve like we have not tried allthe other things !!!!

Am thinking of getting it I can not keep going like this,and dont think can wait another 2 monts and then still be fobbed of again

its seriously affecting things at home

OP posts:

5inthebed · 03/05/2009 09:40

Poor you. I know howyou feel. I'm just glad my paed agreed to it. Can you make an emergency appointment and tell him you want some because of this?

Original poster

Phoenix4725 · 03/05/2009 12:39

she does not like to prescribe medication her words not mine she seems tothink should be able to find another way like i have not tried

Tried to get his appointment brought forward a sthere are several things I wish to discuss but its no go

OP posts:

Debs75 · 03/05/2009 20:05

Not got any advice nut I really feel for you. Ds 10 asd has sleep issues and is often up kicking and smashing his room up most of the night.
Do drs really think that we just let it go and have not exhausted all other possibilities to get our kids to sleep.
Video or audio record some typical nights so you can show her how bad he is. If she still is reluctant to prescribe ask for a second opinion.

Original poster

Phoenix4725 · 03/05/2009 20:23

when hes awake he just awake wants to play and willplay downstairs but i drae not snooze while he does as he will get into something he should not

have videoed some of the nights when its muscle spasms that wake him other nights hes just awake

Amgoing to be asking for a sceond opinon when see the paed for his review

OP posts:

busybeingmum · 03/05/2009 21:47

This reply has been deleted

Message withdrawn

jennybensmummy · 04/05/2009 07:45

This reply has been deleted

Message withdrawn

Original poster

Phoenix4725 · 04/05/2009 08:32

hi tried to email you but it will not accpet it , am on timetorant if any help or my email is

[email protected]

OP posts:

jennybensmummy · 04/05/2009 08:41

i just emailed you on ttr, hadnt realised you were on there!

bubblagirl · 04/05/2009 08:47

my ds is 4 and quite big for his age he has 3ml 30m mins before bed

its called kidnaps the liquid form he has and it is safe as its just a natural hormone that we all have in our systems to regulate our body clocks my ds is great from being on it really coming along

it doesnt keep them asleep but enables them to doze off ds still wakes twice a night but is easier settled than before and you can give another dose after 4 hrs if needed

i'll see if i can find anything on internet for you i do understand how your feeling as i lost my hair through lack of sleep and stress it was hard

bubblagirl · 04/05/2009 08:50

found this

bubblagirl · 04/05/2009 08:51

just realised it was from usa you may need it quicker than that lol

bubblagirl · 04/05/2009 08:56

not sure if you have sn hv or not but we went through her and she got pediatirician to pull her finger out

could be worth just getting on and on at them and say your struggling to function etc

bubblagirl · 04/05/2009 09:00

its all a bit daunting seeing all the different sellers of melatonin wouldnt know where to start so hopefully someone will come along soon

something else we tried was herbal sleeping tablets so again perfectly safe from Holland and Barrett you halved the dose for children so 1/2 to 1 tablet 4 hrs before bed and then the next tablet at bed time they may be worth trying in mean time

my gp said that was fine to try as it was herbal doesnt state on box for children but is ok as gp looked at them and said they'd be fine again no harming properties

didnt work as well as the melatonin but could be worth trying for now

Original poster

Phoenix4725 · 04/05/2009 09:06

yeah we have a sn hv and she erm crap we only ever see her at 6monthly reviews have triedtalking to her but all we get is the your coping so well will get back to you

OP posts:

bubblagirl · 04/05/2009 09:15

that is a shame your not that far away and yet the level of help is so different isnt it

i hope you can get some rest i do so remember how it feels it wasnt that long ago we were having a terrible time

Original poster

Phoenix4725 · 04/05/2009 09:28

yeah sadly it does should not but does seem to make all the differance

OP posts:

bubblagirl · 04/05/2009 09:29

to be honest i just kept on at them until they gave me a cancellation appt maybe you could do the same keep phoning and ask to be called if someone cancels

Original poster

Phoenix4725 · 04/05/2009 09:38

will continue to do so dont think shes very happy with me anyway as have mad eit clear I am planning on seeking a 2nd opinon for ds,think your suffolk way is there anybody you could recomend at ispwich

OP posts:

bubblagirl · 04/05/2009 09:45

im not in Suffolk im brentwood so have no idea im afraid bit too far out do you go sn group could anyone there help push it for you?

Original poster

Phoenix4725 · 04/05/2009 09:58

only ones here are run of a evening but i dont have a babysitter .and truth by then thought trying drag myself out at that time all i want to do is sit in and go flop

OP posts:

bubblagirl · 04/05/2009 10:53

dont blame you well i really hope maybe you can get a cancellation appt just say how much you and ds are struggling and to please contact you if cancellation appt comes up xx

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