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DS, AS on sleep strike - cant cut milk out til Monday what on earth do I do?

10 replies

hereidrawtheline · 03/02/2009 22:50

DS is not sleeping. Last night we were up all night with him. Nap, same thing today, same thing again tonight to go to bed. Its been going on over 2 weeks now. He is demanding more and more and more milk. He is constipated (on laxative) but basically he is just so manic he just wont settle at all. We are shattered, he is shattered and in a foul mood and being extremely whiny etc.

I am replacing his milk with rice milk but I am getting his urine tested through the Sunderland ARU. They advised me to keep doing what we normally do (i.e. give milk) until he gives his urine sample. Its looking like we will have it in the post Monday so I have to hold out til then. I am so stressed and really desperate to get him off this milk as I am starting to see it as a horrible thing in our lives but I have to wait nearly a whole week. What do I do?

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silverfrog · 03/02/2009 23:40

iirc, you freeze the sample for ARU, can't you? so you could do the sample whenever (ie as soon as poss), then whip it in the freezer, and go about cutting milk to see if it makes a difference.

I know this doesn't help for tonight (well, maybe it does, if you can get set up, can't remember if there was an exclusion time for certain things) but it might be worth considering.

Big hugs, going without sleep is no fun

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hereidrawtheline · 03/02/2009 23:46

the lady at ARU said today I had to wait for kit to arrive but she didnt say why. On their website it says there is a preservative in the test tube. I dont know if thats why.

Thanks anyway for the hugs I am really not looking forward to this week!

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myredcardigan · 03/02/2009 23:47

No advice, just sympathy.

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silverfrog · 04/02/2009 00:00

oh yes, that's true.

I was being dense, and thought you already had the kit, but were waiting until yuo could post.

is there anyhting at all that wuold help him settle? (I know you must have tried most things)

would it help if you gave up thoughts of sleep, sat on a bed with your ds, singing gently/massaging softly/etc in dim light?

this must be so hard. dd1 has always been a sleep monster, so I have little experience with no sleep issues, except for when she is ill, and even then I run out of patience really quickly

but I have found it helps to think of it in that way - that she is ill and needs me. And then I settle down on her bed (used to be in an armchair when she was in a cot) and treat ehr like a newborn. So dim lights, gentle rubs, soft singing. It helps me calm down as much as anyhting (I am really rubbish with no sleep)

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hereidrawtheline · 04/02/2009 00:04

I do that too, sometimes I am at my best when he is at his worst. Last night was terrible and I found a well of compassion for him that got us through it (and a migraine to prove it today!) He is sort of sleeping now but calling out in his sleep every half an hour or so either for more milk or just shouting in general so it cant be very restful sleep!

Thanks for the sympathy it really is nice just to moan about it a bit!

DS loves sleep and has always done so much more than his peers. Its just been lately he has got out of control with his AS stuff, milk, and sleep all combined. I am really looking forward to getting back to normal!

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silverfrog · 04/02/2009 00:18

it sounds as though maybe there is somethng else going on other than the milk (but all bound up as part of the same issue)

you are doing so well. this will change, and it will change as soon as you are able to change it. you have already set that change in motion, by asking for the test kit. you are already on the way to seeing how best you can help your ds. you are on the home run.

it will be a tough week, especially if your ds is getting used to the night time interruptions, and factoring them in as "normal", but it is a finite time - the end is in sight!

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Fava · 04/02/2009 08:22

As someone who survived almost 6 yrs worth of 2-3hrs sleep a day, you have my biggest sympathies. When ds was drinking up to 5L (yes you read correctly!)of milk, the dietician suggested to switch to semi-skimmed so ds wasn't as full and would eat more at meals. It did work a bit, ie ds slept an extra 1/2hr. However, he started to sleep when we introduced a story tape on a repeat loop, although he now prefers classic fm. He tells me that the stereo distracts him ''from the noises that come out when it goes quiet at night'', like clocks and ''things that buzz''.

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hereidrawtheline · 04/02/2009 09:16

My gut tells me its the milk. He seems almost hyper when he should be sleepy. He's never done that before, this is a very new thing. But he asks to go to bed - he says he is too tired to do anything and needs sleep (and he says it on schedule)so we start the routine and then all of a sudden he is bouncing off the walls on a sugar high like thing. But all he has had is milk.

Fava - 5L! WOW I thought his 4 pints was a lot! Flippin heck!

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kettlechip · 04/02/2009 10:36

Have you considered things like gluten, aspartame and MSG also? Aspartame was making a massive difference to ds. The good news is that for us, as soon as the trigger was removed, the behaviours improved dramatically. Hope it is the same for you. Hang in there, and grab sleep where you can.

The ARU were really helpful when we used them - is there any chance of them sending a tube by special delivery or courier to you so you can get going? You might get it tomorrow that way. Just a thought..

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hereidrawtheline · 05/02/2009 13:29

hi again! He doesnt have any artificial sweeteners, but does have gluten and to be honest I am not sure about MSG thats in a lot of crisps isnt it, which he only eats occasionally.

I got my ARU pack in the post today - not the tube but the questionnaire you have to fill in first so I will send that back today first class then they will send me the tube as soon as they have received it. But he slept last night! Bliss!

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