sleeping problems- feel like im losing the plot!!

[lourobert]

My son is having terrible sleep problems and has got much worse in the past few months. We have been toth eGP who advised that we doube his melatonin but this seems to have made him worse.

We will usually go to sllep for about half and hour and then wake screaming- it then takes 2 hours to settle him again, I understand that these may be night terrors but they are getting harder and harder to cope with. Im knackered,exhausted and im finding this all so hard to cope with at the moment. Thank god for my dp who is far more patient than me, I almost lost it last night and ended up sobbing my heart out.

I just wondered if anyone had experienced sleep problems in any kind or anything that sounds similiar to this. I dread evenings and putting ds to bed every night becuase i know what a battle its going to be.

Hi - we are experiencing sleep problems with our dd who is just 2 and has cerebral palsy - she does the same thing - goes off to sleep and then wakes up hysterical and cries and cries. The good thing (although also bad) is that I can settle her by breastfeeding. I don't object to her feeding every now and again but she is currently waking about 5 times a night and if I don't feed her will literally scream for a couple of hours. It's like when she starts screaming she gets to a point where she can't bring herself back - crying it out is never going to work for her she just wouldn't stop. She won't allow anyone else other than me to handle her at night so if I go out for a couple of hours and she wakes DH will still be in her room with her screaming when I get back.

Everyone says that it's my fault for breastfeeding her but I am too exhausted to try and stop as I just can't be up all night with her screaming. If I ask any doctor then they just blame breastfeeding too. The fact is that she does not wake up to breastfeed - she wakes up (in fact they're not even really awake are they?), screaming and crying and then is desperation I end up feeding her to calm her down. I am considering buying some Melatonin drops on-line and trying them but I worry about doing this without medical supervision.

I have no idea why she wakes screaming and no idea how to stop these sleepless nights. I've been seeing a counsellor and she has recommended the sleep nurse at cerebra : www.cerebra.org.uk/parent_support/support/sleep_service.htm I'm sorry I can't remember off the top of my head what kind of condition your ds has so I don't if Cerebra would be something of use.

Best wishes, and sorry I haven't had any advice for you.

No advice, just some sympathy. Screaming in the night is horrible and so exhausting/frustrating. hope tonight is better. I hate that feeling when I nearly loose it- feel awful after........ so, much sympathy and peaceful sleep vibes coming your way. Sleep deprivation is a cruel cruel thing!

Thanks for the advice Riven - I was up 5 times with dd last night and finally gave up at 5.40am and got dh to go in with her - she then screamed 'I want mummy' repeatedly until I got up again at 6.30am. I totally agree that the normal bedtime advice for an NT child just doesn't work for our children. Let's face it, their brains just don't work in the same way. It's like some cruel joke that the days are so much harder than with other children so on top of that we also have to cope with crippling tiredness as well.

my son has Williams syndrome and had Infanitle spasms although has been sf for 15 months and currently weaning epilim.

We get melatonin from GP and doubled the dose two nights ago however this made him 100 times worse so tonight we are not going to give any meletonin, cant be any worse than it has been!!

OUr kids sleeping patterns sound familiar then huh! I guess we will just have to keep persavering- Im lucky to have a very calm and patient dp so balance things out! I wild be contacting the doc again soon I think. OUr community pead recommended being referred to sleep clinic but im not sure what advise they could offer they we arnt already doing...worth a shot though.

The last sentence of your last post sounded familiar Jenkeywoo I said exactly that to my partner last night, why, on top of everything else do we have to sufer such severe sleep deprivation.

We used Melatonin in the past when DS had trouble settling and it worked but would not get him back to sleep if he woke in the night. He goes off to sleep no problem now so haven't used it for ages. He has always woken in the night but I used to be able to get him to settle and be quiet, even if he didn't go back to sleep, or he would go back to sleep. In the last month he has still been waking in the night but won't stay quiet and runs around the house, bursts into our bedrom (and DD's if we let him), whoops, gets in the shower etc etc. At least he doesn't get upset, he is happy as Larry, but he is very lively and demanding. He started at residential school in January so I don't have to tolerate it for long at a time, although I had to get up in the night even for a short time every night for years. Obviously he is much more closely supervised at school so maybe doesn't get into a lively pattern and, if he does, they have paid night staff to sit with him if necessary. We also see changes in his behaviour suddently rather than gradually as we did when he was at home so it is more of a surprise to us. I saw his Clinical Psychologist yesterday who has a lot of experience with sleep disorders. We didn't have much chance to talk for long as DS was with me, but she suggested something called Valerian which you can get in health food shops and she says it keeps them asleep. I know you can get slow release melatonin but don't know how/if this works. I am going to try to get some Valerian today to try.... watch this space!

I wouldnt mind so much if my son woke and was happy becuase he could lay in his cot with classic fm and just chill but its the wailing and screaming that is just so hard to bear,

Im taking note off all the meds mentioned so I can have a full discussiobn with the comunnity pead and GP when I see them.

Also ask about Chloral Hydrate which is a MEDICATION as opposed to hormone like Melatonin or other "alternative" treatment. It is prob too extreme but always worth asking. Yes, my DS is happy when he wakes up but he is a heavy lumpy 12 year old so no cots for him!! When he was MUCH younger we did classic controlled crying and it worked quite quickly but it was hard. Also, he didn't have any siblings then so we weren't risking waking them. Good luck!

I have noticed that the more tired children get, regardless of SN/NT, the more hyperactive they get! You would think it would be the opposite....

Since the double dose of melatonin made ds so much worse we decided not to give him nay melatonin last night. It took him hours to get to sleep and in the process he was so tired and frustrated that he did have spells of crying but not nearly as intense as the screaming when waking after taking the melatonin. SO the crying went on for longer but not so intense which is slightly easier to handle.

He obviously needs somthing to help him fall asleep and Ive called the GP today who is going to speak to the paed at the CDC to see what they think she be the next course of action.

I dont really want to give him a sedative as Ive heard that they are just so addictive. If he starts on one will it mean that it is likely that he will always need a sedative and that the dose will just need to start increasing.

I have emailed my son'd paed with the valerin suggestion too so thanks Davros. Did you get any to try?

Yeah i did mention piriton to the GP....I ve still not heard from either her or the paed so I guess we wont hear until after the weekend......my parents are having ds tonight and Im going to bed at 7pm I think so Im good to go again tomorrow morning