Sleep

[rebl]

I don't know if anyone here can help. DS(4) is horrendous at settling at night. He can be falling asleep at the dinner table but the moment we switch the light of he's literally bouncing off the walls. Last night we hit the latest that he eventually fell asleep 10:10pm. We have a well established bedtime routine of tv prog, wash, story, song and cuddles. Then hearing aids out. By the time we're at the stairs his eyes are wide open and he's wired. He's climbing the bookcase, the wardrobe, onto the windowsill and jumping. He's running into the bathroom and jumping off the step. This has been going on for 12months now and we're reaching the end of our tether tbh. The hv has told us to ignore, that didn't work he was into dd room and waking her up. Then the hv told us to return to bed. Been doing that for 3 months and we're still in his room 2 or 3 times every 5 mins picking him up and putting him back to bed (no eye contact given and no talking, not that he could hear us). We've tried sticker charts, don't work on anything and definatly not worked on this. We've tried taking a toy away everytime he's got out of bed and he's ended up with all toys taken away, doesn't appear to care. We've spoken to him about it at length and he says he doesn't know why he can't go to sleep.

I have to say that even when he is asleep its not restfull. He sleep walks numerous times a night. He's currently going through a phase of pulling his matress off the bed in his sleep and sleeping on the slats of the bed. He's sprained his ankle doing this as he got his foot stuck between the slats.

We're running out of ideas but we can't continue like this. The school nurse who is taking over from the hv who I saw today said to go to the GP as we need to get this sorted and she doesn't have any other suggestions that we haven't tried. But I'm not really sure what the GP is going to do. Have made an appointment anyway for 2 weeks time.

Has anyone here got any suggestions please. We can't be alone in struggling to get our child to sleep at night.

Is it linked to taking his hearing aids out? I'm just wondering about fear and imagination. Might it be worth trying leaving them in and removing them after he's asleep?

Ds goes to sleep 1am on a good night, 3am on a bad night. 3am night, he will more than likely sleep through. 1am night he wont sleep through.

Just doesnt seem to get tired. Has great difficulty staying still or relaxing.

I have tried every trick in the book over the years. Expert advice and therapy etc, etc.

CAMHS and Paed have recommended Melatonin, as they believe this is a biological problem.

We've discuss melatonin with DD1's psychiatrist and will be giving it a go in Sept if she is still awake until after midnight every night. I'm not keen on meds especially as she is already on some for anxiety but I'm also worried about her falling asleep at school so stuck between a rock and a hard place.

You could ask for it Rebl if you can't find a different solution.

DS1 drops off between 10 and midnight, and tends to wake 3-4 times, but now only needs me if he has soiled his nappy. Generally wrecks his room (quietly!) chucking clothes about - there are no toys in there.

We have also been recommended melotonin.

Any change in routine makes it worse - he stayed over at SIL's this week, the next night he woke Every. Flipping. Hour. The night after that was a really late one. Then another late one last night. I think he's knackered today though. fingers crossed he goes to sleep soon, I am knackered, want to go to bed!

We thought he was knackered tonight but he's still bouncing around up there. I'm fed up of going up and down those bloody stairs. Why haven't I lost weight?!!!

We're reluctant to try drugs but tbh I don't know if we've got any choice. He can't get up in the mornings he's so tired. His behaviour is appauling during the day because he's so tired, hitting and biting and just generally being not nice to know. I do wonder if there is more to him than just his obvious difficulties. He can't stay still for more than a millisecond. How school are going to manage him is beyond me because he's like he's got ants in his pants. Hes a full on boy 24/7. But whether the daytime stuff is related to the nighttime stuff I don't know. Guess we'll have to see what the GP suggests. I think he's seeing the general paed in the next few weeks as well, maybe I should mention it to him?

Dd2 is the same, she now takes 3mg of Melatonin, she still bounces off the walls but not for as long , she used to take up to 4 hours to settle, now she takes 30 mins-2hours.

Dd2 has only just fallen asleep after jumping on the sofa and bed for an hour.

Rebl, that was my initial reaction, i dont want to use drugs. I had prescription in December, but didnt collect it. I felt almost guilty, as if i should be able to deal with this, he is only 6 years old!

It was explained to me that Melatonin isnt a drug as such, it is a hormone which is found naturally in the body anyway and aids sleep. Something that many ASD children are lacking in.

And CAMHS pointed out to me, i am helping ds with all of his other difficulties, so why not sleep. Its just another need.

Received the prescription in the post yesterday and was supposed to collect it today. I didnt though I am planning on starting it at the weekend just in case of any side effects (well thats my excuse for putting it off a bit longer)

I have heard nothing but good reports from others on here, so will be taking the plunge!

The thing that persuaded me was that we can stop and start as we wish - it is not addictive. I was worried too. But after a week I can see that it really was his body clock that was 'out of kilter'.

To watch DS2 snuggle down and fall asleep comfortably between 9 and 10 is so good. It doesn't look like he has been 'drugged' which is what I was worried about too. I am sure all the sleep he was missing out on cannot have been good for him (mind you not seen the results of more sleep in his behaviour yet )

The best thing for DS is that he now has a few hours less of crippling anxiety at night. I don't think the psychiatrist wants us to use it for long continuously but it is my understanding that we could see after a while if it has shifted his body clock and then just use it occasionally when he we really need it!

SLEEP oh know how you feel our dd is sound asleep now but wakes about 2.30 and stays awake till about 5.30 totally hypo claps laughs tries to jump off the bed anything but sleep. We are shattered and when she has to get up for nursery in the morning its so hard to wake her.
Told the doctor and he gave us phenegen to try but I read all side affects and havnt given it.

ds who is 9 was prescribed melatonin when he was four, this was before the liquid was available we had great difficulty getting him to take it even when it was disguised in food.He has also used chloral hydrate but the efectiveness of this was short lived. With great relucatance I have put him back on the melatonin this time in liquid form and it IS GREAT settles to sleep in 20-40 mins as oppossed to 1-2 hours, takes about 30 mins to show some effect.
He is happier,healthier and we now get a couple of hours together of an evening, try it you may be suprised it has sorted out ds (for now, fingers crossed) who has had every behavioural intervention, sleep studies going.
For once I am enjoying the summer !!

It really is just a natural boost of the hormone that is already present in his body. DD1 is 4.6 and has taken it for a good while now. Without it she doesn't settle. We are going through another patch now, but don't know why. But with it, usually, she is asking us for bed.

Well as both DDs are still wide awake and active - can hear bumps and bangs but pretending not to notice - I'm feeling better reading other people's experiences and knowing I'm not alone. I've spent the last 13 years having people telling me what I am doing wrong with the bedtime routines, etc so it's nice to feel 'normal'.

I didn't know melatonin was a natural hormone - I think I feel a bit better about it now.

Seeing my child snuggle down and fall asleep happily between 9 and 10 would be a lovely experience.

Oh was so good to see this thread tonight! We are having a really bad patch at the mo. We are starting to wonder if there is a changing seasonal pattern - as summer arrives we seem to be getting more of a manic, hyper wired sort of state (and very dilated pupils with it). She is totally unreachable in that state and makes no sense, running round the house over the furniture laughing and carrying on. This seems different to the angry aggression we have been getting in the evenings, and we realised this is what she was like this time last year.

She escaped into the garden twice this week - this is at about 11pm at night, it was so hot we had the back door open. The second time I couldn't find her at all for an hour, was panicking thinking she must have got out of the garden somehow - we eventually found her hiding in the middle of a bush! She was giggling and refusing to come out. She is wide awake at the moment (although in bed thankfully). Friends thought the bush story was funny (well it is a bit after the event , but it does get exhausting and wearing day after day, night after night. Agree it helps to read others who know just how it feels.

Was thinking about finding out about melatonin do you get this from the GP or do you need to go to Paed for this? Does anyone else find there is a seasonal difference with their child - could it be the light levels, or heat?? Maybe down to end of school year as well? She is noticeably more hyper and talkative in the day too, even though exhausted. Puzzled and just wondered if anyone else had noticed this sort of pattern.

Sorry a bit long.

Oh and tried Vallergan once prescribed by Paed (its what they use as a pre-med in hospitals for children) it was terrible.

He slept well, but next day complained of headache and looked drugged and was 'sleepy' all day. Wouldnt recommend it to anyone.

In fact this is what put me off of trying any other medication for sleep.

We have had some desperately awful periods of sleep deprivation with dd now 4 and they haven't all been resolved by melatonin but getting off to sleep is now so much easier. She can still wake in the night several times and sometimes for really long periods.

DD has been on it for nearly 2 years now. We tried various other advice but behavioural approaches just wouldn't have worked for her and would have distressed her so we went for the melatonin as it is naturally produced in our bodies. When we start yawning and feeling sleepy that's melatonin being produced and preparing us for sleep, and so it's artificially producing same effect in dd.

One night she had been sick and wouldn't take it ( in yoghurt ) and was back to her old tricks of still tearing round the place til 11 or 12.. Was a nightmare.. But we're on a better run at the moment..

Trouble is I often still wake and find it hard to switch off in case I'm on duty anytime soon! dd's epilepsy probably contributes to sleep difficulties too.. Has drugs for that and sometimes an adjustment re dosage helps sleep issues for a while..

I hope you find a solution soon.. there is nothing worse..

Sorry rebl I previewed and edited and seem to have deleted the first part of my post so it now looks like I have ignored you . And also that I am pleased that you are having trouble . Kept getting interrupted by DD coming down stairs so am blaming it on that! Started by saying, no you are not the only one struggling with this (as you will have seen by replies) and I hope you get some support and help from the GP. My DD is 9 and has always had trouble, lots of well-meaning advice but nothing has worked so I am no help but much sympathy.

Have noticed donutbrain was offered phenergan. My experience of this was not good. Was actually given for DD1 when going on long distance flight to settle her as she had been unwell. I didn't realise that for 1 in 5 it can have the opposite effect as indeed happened. We had a totally hyperactive 2yr old while stuck on an aircraft. Not an experience I will ever forget (and neither I should think did the other passengers ). Just something to be aware of anyway.

MELJLINCS You have made my mind up now I definatly will not be giving the phenergan I had read that, and that some children can have a convulsion too so that scared me as she has them sometimes.
Dd is 4.3 now and her sleeping has got worse but had been hoping it would get better when she goes to school all day,but not so sure now youve said your dd is 9 and still bad sleeping.
Oh well seems there are alot of us in the same boat

DD1 has gone to school today having slept from 12.30 - 5.00am. I'm dead beat so why isn't she? I winder if it affects her concentration at school.

Perhaps I should wonder instead!

That's sleep deprivation for you!

The hv called today and told me to keep on with the behavioural techniques we've been using for months and said that we must be doing it wrong because it always works in the end . I'm not sure he understands what we're saying about ds being so wired. I suggested to dh last night that maybe we should record ds bouncing around the room and then see what the hv says. Anyway, got an appointment with the gp in 2 weeks time so we'll see what happens there. Its nice to know I'm not alone in this and also good to hear positive stories about using drugs (and the ones to avoid).

Crikey! That's arrogant.

Sounds a bit like the woman who runs the Mainstream Autism Base DD1 attends. Apparently what they do in there always works for every child. A bit of me would like DD1 to prove her wrong now.

Perhaps your HV would like to come round every evening and show you where you're going wrong!!!