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Sleep problems

(42 Posts)
Caroline5 Mon 02-Jun-03 16:21:31

Sorry to divert from the DS thread...

Dd2 (now 2) is turning into a terrible sleeper. She wakes up at the slightest noise and then refuses to go back to sleep unless she is in our bed. Last night she was awake from 11pm to 3am, thrashing about the bed and fidgeting!

Do you think controlled crying is worth even trying? (She has global delay and 'severe learning difficulties' - I'm not sure she would really "get it" or it might take weeks/months, which I couldn't cope with. Plus it seems too harsh when she doesn't understand what's happening. Anyone been in a similar situation?

Caroline5 Mon 02-Jun-03 16:23:10

God knows how that winking face got in there, it's hardly in an appropriate place! Wish you could preview posts for new conversations.

2under2 Mon 02-Jun-03 17:07:38

Caroline, rushing here whilst cooking dinner, but wanted to let you know that Phenergan (antihistamine with a sedative effect) really helped us when it finally all got too much (no we didn't all take it, just dd )! Dd1 has been a dreadful sleeper from birth and around her third birthday it got to the stage where I was getting close to throttling her. We used Phenergan for nearly a year, it seemed to help her get used to sleeping well eventually. For what it's worth, dd1 is developmentally normal and still didn't seem to 'get' any behavioural sleep methods.

lou33 Mon 02-Jun-03 17:47:47

Caroline I have the same problem with ds2, who has cp. He wakes a lot, mostly because his legs are troubling him, so need to be repositioned. I just have him in with me now. Tbh i quite like cuddling up to him. Sorry it's no help!

2under2, did you have to keep readjusting the dosage as dd got used to it? When dd1 was small she had a very odd sleep pattern, and we were given that too, but it only worked for a short time as she got immune to it's effects.

aloha Mon 02-Jun-03 19:11:28

I suppose it *might* be very hard, but it might also be much easier than you think - and you won't know until you try. I sleep trained ds when 8months, and he certainly wasn't capable of understanding what was happening in an intellectual sense, so I don't see that it would be that different with your dd. It isn't that harsh IMO, and there are lots of different methods. The NCT book of sleep offers lots of options with varying degrees of 'harshness'! Good luck. Sleep is very, very necessary for children and mums, IMO.

Caroline5 Mon 02-Jun-03 20:45:37

Thanks all. 2under2, do you have to get the Phenargan on prescription and was it difficult to wean your dd off it?

Lou, I also like cuddling up to dd but wish she would happily go to sleep. Last night, she wouldn't sleep even though she was in our bed and kept wriggling around on her back all over the place. Tbh, it's dh who wishes she wasn't in there - he often ends up in the spare room due to dd's fidgeting!

I might give cc a try, but will have to wait till the summer holidays so it doesn't matter so much if it disturbs dd1. The trouble is, dd2 also throws up if she cries too much, so it really isn't a very attractive option

lou33 Mon 02-Jun-03 21:44:00

Yes it gets very tiring when ds won't/can't sleep, but for now it is easier for me to have him in the same bed, so I don't have to get up every hour. I'm sure you understand! Dh gets shunted out so often he thinks he has his own bedroom now, but at least that means I have no snoring to contend with and no battles with the duvet. He doesn't seem to mind on the whole, though it would be nice to be able to be in touching distance.

doormat Tue 03-Jun-03 11:09:29

Hello Caroline5 my son has been prescribed melatonin. He has severe developmental delay. He has been on this medication for the last 2 years. Before that he was awake from 11.00pm until 4.00am, it started when he was about 3 years old.

His sleeping probs has put a severe strain on our family. My other children would be awake all night because his moaning was so loud. Their schoolwork suffered and we were all moody and overtired. I must admit the health professionals have been brilliant in understanding our situation.

Some nights the melatonin does not work. In the end we have had to put him in his own room and close the door of the evening.If I hear him moaning I go into his room and give him a feed, nappy change, see if his temperature is o.k, and most importantly give him a cuddle and say goodnight to him. I have to be cruel but it is the only way our family can function normally.

Our ds has not been prescribed phenergan. It would be easier as it is liquid form. The melatonin has to be emptied from its capsules into his evening feed.

I sincerely hope you do not end up with the same problems. Sleeping problems seem to be the "norm" of children with special needs.

Caroline5 Tue 10-Jun-03 16:00:03

Thanks doormat, sorry I forgot to look at this thread again recently. Sorry you have had such a hard time. I seem to know loads of SEN mums who share a bed with their child most nights - I always end up with a cricked neck and a 'dead' arm! I have tried this stuff called valerian root, which did seem to work with my other dd when she was waking in the night, but it doesn't seem to work with dd2. The last few nights she has been a bit better again, no idea why!

2under2 Tue 10-Jun-03 17:38:36

sorry Caroline5, also didn't look at this thread for a while. Yes we got the Phenergan on standing prescription, and didn't have to wean dd off it. It's completely non-addictive and only had positive side effects for us - the better sleep (dd actually seemed properly rested in the morning) and also no travel sickness during the day. Seems to taste fine, too. Some children don't react to it in the desired way though and seem to get hyper rather than sleepy.

Loobie Thu 17-Jul-03 21:05:13

Phenergan is available over the counter in most high street chemists.Piriton syrup is another antihistamine which can help with sleeplessness in kids.My son is autistic and is 7.5 and has just begun having sleeping probs in the last 4mths with him ending up sitting up with me then coming to bed in my bed,which doesnt really matter much to me as im on my own any way.He just cant get off to sleep even though he is in bed at about 8:30 it can be any time between 11 and 1am before he manages to get to sleep which is frustrating for him, im reluctant to take him to the docs for help as he is worse than hopless and i really want to avoid the night sedation road if possible.Any suggestions would be greatly received and tried out as we go back to school in 4 weeks and would really like to be sleeping for then.

mrsforgetful Sat 26-Jul-03 00:12:50

LOOBIE-my son is 9yrs and has Aspergers syndrome. He too NEVER slept B4 midnight- from about the age of 1. The consultant that diagnosed his autism FINALLY came up with something that worked from the 1st night we gave it....and its not a sedative! I gave phenergan and a stronger version Valergan for most of his first 3 years- and blamed myself for his sleeplesness- but NOW HE SLEEPS!!!
Heres how!!!..... Apparently children with neurological problems such as ADHD and ASD/AUTISM have an impaired 'body clock'- meaning that they simply do not get tired. The hormone responsible for this function is MELATONIN and is widely used/available in the USA for Jet Lag . It's not licenced here so i don't think a G.P can prescribe it- however the one who diagnosed your son should.
NOW THE RESULTS!
Tom was prescribed just 2.5mg an hour B4 bedtime.
DAY ONE
He yawned (i realised that he hardly ever yawned!!!)after 30mins and ASKED (!!!!) to go to bed after another hour!!! I went up with him and my other 2 boys and went in to settle them 1st- i then went in to settle tom (expecting him to be tossing and turning or 'fiddling' with wallpaper seams or pulling threads on his sheets etc)- but he was ASLEEP!!!!!!!(and it was only 9 o'clock!)
DAY TWO
He woke naturally (normaly i'd have to wake him)
We taked about his Yawning....he smiled every time he yawned ! He also said 'now i see why you have to go to bed'!! this time he was allowed to go up to bed at 8 to watch a video- privaledge not allowed B4- he fell asleep watching it- by 8.30.
And Now>>>>> we've accidenly/deliberately missed doses and he is never asleep B4 12- then the next night with the capsule he is asleep within 2 hours of taking it. however as he's been taking it for 3 months now we've noticed that though he stays awake without it....he deffinitely looks tired and appears to fight the tiredness-whereas B4 he was bright eyed and bushy tailed all night!!
so if we do forget to give it at 7pm ...even when we remember to give him it(usually about 9 when he starts to get rude and cheeky...possiblly as he's tired....) we find that he will then fall asleep within 30mins if sent straight to bed!

B4 we tried this our son had to be checked frequently till he fell asleep as he tied sheets round his neck,chewed playstation wires,fiddled with light bulbs etc....yet as i said B4 i wouldn't try any more sedatives

THIS HAS CHANGED OUR FAMILY AND EVEN SCHOOL HAVE NOTED HE IS CALMER- AND FROM WHAT WE CAN TELL....ITS SAFE AND SIDE AFFECT FREE!!

doormat Sat 26-Jul-03 08:43:23

msforgetful my ds has been prescribed melatonin for a long time now. We live in the uk.

doormat Sat 26-Jul-03 09:01:44

see down the thread.

mrsforgetful Sun 27-Jul-03 23:25:44

DOORMAT:do you get yours from your gp as I feel my body clock has forgotten wot it should be doing too-as though i am so much more relaxed in the evenings with tom sleeping better- we still have probs with our 6 yr old son who seems to be autistic(beginning the long route to diagnosis in sept when he will be observed in school)I looked on the web to buy melatonin from USA and it would cost £20 a month which i just cannot afford.
i'm on antidepressants and am 'supported' by the local mental heath unit ...so my gp only lets me have 14 sleeping tablets every 6 months(!) this is so occaisionally i take them 3 nights in a row and get 3 nights sleep-she says she doesn't want me to get addicted- and a few times i have taken a couple of toms melatonin and slept well.

Davros Mon 28-Jul-03 08:37:16

Definitely agree with using Penergan or melatonin, especially if its to help develop better babits, but think you should combine it with some behavioural methods too using a good sleep book, although can't find anyting in my saved stuff to suggest, maybe the one suggested by aloha? I never let my son come into our bedroom during sleeping time, he can come in to sit with us and watch TV etc but not to sleep. At one time, some years ago now, I was spending hours in his room at night watching him and I swear he would do everything he could to keep himself awake. While I was there he ignored me but wHenever I left he would bawl so I stayed and stayed but after a month or so I had enough and decided he would cry if I left after 10 mins or two hours so off I went, first just on to the landing with timed "popping back" and it got better and better, less crying, less thrashing and no problems now. I suppose sometimes they may have a crisis of security and need comfort but it can just be or become a habit. If you know anyone going to the States this summer they can get Melatonin over the counter if you can't see your Dr quickly and I think chemists will ask you why you want Phenergan so you may want to say its soemthing to do with allergy or whatever to avoid any discussion about giving it to induce sleep. GOod luck, let us know what happens.

Loobie Mon 28-Jul-03 20:02:03

To all you who have kids on melatonin for sleeplessness, are yous in the uk, i asked today in my local alternative health shop to be told melatonin is "illegal and banned in this country"then asked in boots store to be told " it is unlicensed in the uk so therefore unavailable" could any one enlighten me as to how else to obtain it. my g.p is a total farce not even worth having(am thinking of changing)

mrsforgetful Tue 29-Jul-03 00:06:21

LOOBIE:MELATONIN -I live in wiltshire/uk and we take Tom's prescription to Superdrug in town- and the pharmasist tells me that he is the ONLY one she orders it for in the area!
: It is NOT available to buy in the uk- due to no pharmaceutical company wishing to develop/test/ licence- was sold previously as a health food supplement but was withdrawn when it began to be used widely as a sleeping aid....TYPICAL!! However i discovered yesterday that on EBAY.co.uk if you search for 'items available to the uk' there are people in the usa selling it to us in the uk at a fraction of what i was prepared to pay for MY own use - i found prices around £20 a month- on EBAY i'm getting some posted from the USA for a total of £7 (2 months supply!!!!)
PERSONALLY I WOULD TRY TO SPEAK TO SOMONE LIKE A PAEDIATRICIAN OR OTHER SPECIALIST WHO ACTUALLY SAW YOUR SON SO YOU CAN DO ALL THIS 'ABOVE BOARD' AND THEN ALL YOU DO IS TAKE THE PRESCRIPTION TO CHEMIST AND THEY ORDER IT FOR YOU DIRECT FROM MANUFACTURER- MANUFACTURER THEN RECORDS CHILDS DETAILS FOR IT'S DATA BASE (THIS IS CALLED 'SUPPLY ON A NAMED BASIS). THIS IS TO LOG HOW MANY CHILDREN ARE SUCCESFULLY BEING TREATED WITH IT- I HAVE BEEN TOLD AT SOME POINT I MAY BE CONTACTED SO THEY CAN ASK ME IF THERE HAVE BEEN ANY SIDE EFFECTS ETC (NONE SO FAR!!!!!,,,,,jUST SLEEP!)
however........the way i look at it is that parents in the USA can just buy it like we buy phenergan and therefore if you got some from the usa and tried it ...then all that is different is where you are living!!!!
THERE IS NO WAY I'D RECOMMEND THIS WAY OF GETTING IT IF IT WAS A SEDATIVE....BUT I AM SO AMAZED BY THE AFFECT IT HAS HAD ON TOM THAT I JUST WANT EVERYONE WHO HAS CHILDREN WITH THESE 'SPECIAL NEEDS' WHICH SEEM TO COME HAND IN HAND WITH SLEEP PROBS TO EXPERIENCE THE RESULTS!!!
(loobie- your son's sleep probs fit exactly the criteria for melatonin- ie difficulty getting to sleep....it is less effective for kids who wake up during the night having fallen asleep easily)
I AM GETTING THE MELATONIN FROM THE USA FOR ME AS I KEEP PINCHING ODD ONES FROM THOMAS'S SUPPLY AND I'M SCARED THE DOCTOR WILL REALISE THAT THEY DON'T LAST HOW LONG THEY SHOULD AND STOPS HIM HAVING THEM.
i hope that shows you how well they work as i have found that after 8 years of sleep probs with thomas....i have lost the art too...so rather than beg my gp for more sleeping tabs i am planning a month of melatonin then a few days without-as this is what we had to start tom of with- sorry to go on everyone....you can all ignore this message if it's too long- it's just to have on one hand had your son's lifelong dissability confirmed and felt devastated- it is for me a real relief that at least we can help his sleep probs- in this one area he at least enjoys 'normality'.....whatever that is!!

Davros Tue 29-Jul-03 08:17:03

This organisation may be of interest to some members - Sleep Scotland, an organisation dealing with sleeping difficulties. I believe they are currently trying to assess need in other parts of the UK and their usual practice is to train people to work with parents on a local basis. However, I have heard that they are very approachable and will give advice and talk to parents. Contact Jane Ansell 0131 651 1392, email jane.ansell@ed.ac.uk or visit their website here

doormat Tue 29-Jul-03 09:24:15

Msforgetful and others who are interested.
I live in Merseyside. I have never had a problem getting melatonin prescribed for ds.I explained years ago to paediatrician that ds was having trouble sleeping through the night and he prescribed virtually straight away.Paed already knew he had sleeping problems but it was the effect on the rest of the family that he got prescribed melatonin(ds would keep us up for around 5hrs a night)

Also why dont you try natural remedies rather than taking a few of his tablets.If my mind is working overtime I usually get a cup of chamomile tea(tbags from supermarket)and that does work for me.Also I spray my pillows with lavender and that helps, but be careful too much lavender has the opposite effect.Natural remedies are far cheaper than £20 a supply.Just give it a try. Hope this helps.

mieow Tue 29-Jul-03 23:09:18

My DD is standing upstairs shouting at me. She has been awake since 8:30pm (she goes down at 6pm) I have put her back in bed a number of times and she just keeps getting out.
I had her into a great sleeping pattern till DH came off nights and onto days. She now gets up every night, shouts and screams at me. She has Cerebral Palsy and has Learning and speech problems. I am fed up with this every night and have decided to be tough but she isn't going to sleep. What should I do? She is wide awake up there and its doing my head in.

mrsforgetful Tue 29-Jul-03 23:47:05

MIEOW-'chamomilla' homeopathic remedy - drops added to water and excellent at calming my Autistic/ADHD son when he was a baby/toddler- the one i bought made by 'welleda' and available in Holland and Barrat-thinking of you!X

mieow Thu 31-Jul-03 12:31:59

She woke up last night at 9pm, I went up and put her back in bed 3 times and she was asleep by 10pm. Hopefully tonight she will fall back to sleep quicker

Davros Thu 31-Jul-03 13:03:57

Sorry Mieow, forgotten how old she is. Maybe 6pm is too early? My son went to bed at 7.30pm for about 3 years but then grew out of it and just kept getting up, wouldn't settle so we eventually switched bedtime to 9.30pm. I know this sounds very late but its realistic for us now but he's nearly 8, we switched about 1.5 years ago as we were flogging a dead horse with 7.30pm. He sleeps through until about 7.30am with the occasinal wake up. I really didn't want his bedtime to get later but its better than going up and down like the lodger's nightshirt!

mieow Thu 31-Jul-03 18:37:12

If you don't put her to bed at 6pm she just falls asleep downstairs half an hour later LOL, all my kids get up at 7am, which is great during term time but not the hols (I want a lie-in!!! )
She gets tired around 5:30pm and goes to sleep easy but she has got into a routine of getting up at 9pm. She was very good last night, only a hour, hardly any screamimg and only took me putting her back to bed 3 times to get her back to sleep. The night before was 3 hours of screamimg and me going up about 20 times and putting her back into her bed.

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