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new to site

bubbles2bb

Hi

My name is Jo, I have just joined this site, I am a mother to an almost 5 year old boy with learning difficulties and autism (diangosed july 2013), he is non verbal, with very limited receptive language, in nappies, unable to self feed etc etc. However, our main concern is his sleeping - this has been a problem for over two years, but just gets worse, it is hell, so i have joined the group to try and find other people in similar situations or to see if there was any advice out there.....

We have a new paediatrian, although her answer to everything is to keep increasing his medication, which doesnt appear to do anything, but more importantly i just dont want to keep increasing medicine, i just wondered if anyone else had tried anything else?

He currently has 2-4mg circadin in a yoghurt each night along with 3-4 mls melatonin, this used to get him to sleep and keep him asleep until 1-2am when he would be up until 4.30 am then go back off until 6.30am, we were told to re dose him if he wakes before 2am, but have given this up as it doesnt make any difference, once he is awake that is it!

He currrently goes to sleep at 19.30pm and wakes around 22 - 23 and can be up all night and go all day, i cant settle him at all in his room and if i bring him in my bed its hit or miss if he goes back to sleep, if he does, he wakes several times, i am exhausted, i work full time and so does his dad, so we take it in turns to provide cares.

I was just wondering what everyone else out there does to tackle the sleeping? Has anyone tried sleep studies?

thanks

Parents

  • Thanks for your reply.

    Yes your right, sorry I know its not a drug as such as its naturally occuring, However it can cause seizures as well as other side effects if the dose is too high for that child, which I guess is why I'm anxious.

    Yes they are both types of melatonin your right, the tablet is slow release the other fast release liquid, 7 months ago he was just on liquid but as he was waking up more this was changed gradually to part tablets as it was thought the liquid would induce sleep and the tablet would keep him asleep longer.

    The tablet is hard  to get in as he has only just started to chew and tolerate lumps so panics if he finds the tablet pieces and they are too large etc.

    So instead of 5 mls and 2 ml if he wakes, he has3mls liquid and 2 to 4 mg tablets, usually just one 2mg tablet, so 5mg in total, we do not re give if he wakes as makes no difference.

    We thought about the noise and 3 months ago got triple glazing in his room, we also got a thicker curtains in case the street light was disturbing him, we  have a mattress on floor as he would throw himself out bed and therapist told us to get this as he needs to feel he can get out if he needs and for safety etc,  however this is a bit of a nightmare in itself as obviously wants to get out all the time. I also finds he will do lots of self stimulating behaviour like bouncing which gets him over excited again.

    The one mistake I know we have made is 1.5 years ago, long before his got diagnosed, we gave him bigger room, which I have regretted ever since as it freaked him out for months, we have finally got him back in his bed but of course he wakes so much he comes into us non stop, doesn't matter how long you stay in his room or put him back he comesback to our room.

    I often think about changing room back but thenI think I will unsettle him again. He has never been bothered by having a dirty nappy or one full of urine, he doesmt appear to recognise at all when he does either so I don't think that would concern him.

    I just feel everything I do at the moment doesn't make a difference, I did recently change his bedtime from 7pm to 7.30pm, so he is usually asleep by 745pm, I recognise that this may sound selfish but if I push it back later I never get any time before I go to bed, my partner is up at 4am for work and I do nights and 13 hour shifts so its a rare couple of hours to ourself as he wakes from 10pm.:-(

    Thanks for your advice

Reply

  • Thanks for your reply.

    Yes your right, sorry I know its not a drug as such as its naturally occuring, However it can cause seizures as well as other side effects if the dose is too high for that child, which I guess is why I'm anxious.

    Yes they are both types of melatonin your right, the tablet is slow release the other fast release liquid, 7 months ago he was just on liquid but as he was waking up more this was changed gradually to part tablets as it was thought the liquid would induce sleep and the tablet would keep him asleep longer.

    The tablet is hard  to get in as he has only just started to chew and tolerate lumps so panics if he finds the tablet pieces and they are too large etc.

    So instead of 5 mls and 2 ml if he wakes, he has3mls liquid and 2 to 4 mg tablets, usually just one 2mg tablet, so 5mg in total, we do not re give if he wakes as makes no difference.

    We thought about the noise and 3 months ago got triple glazing in his room, we also got a thicker curtains in case the street light was disturbing him, we  have a mattress on floor as he would throw himself out bed and therapist told us to get this as he needs to feel he can get out if he needs and for safety etc,  however this is a bit of a nightmare in itself as obviously wants to get out all the time. I also finds he will do lots of self stimulating behaviour like bouncing which gets him over excited again.

    The one mistake I know we have made is 1.5 years ago, long before his got diagnosed, we gave him bigger room, which I have regretted ever since as it freaked him out for months, we have finally got him back in his bed but of course he wakes so much he comes into us non stop, doesn't matter how long you stay in his room or put him back he comesback to our room.

    I often think about changing room back but thenI think I will unsettle him again. He has never been bothered by having a dirty nappy or one full of urine, he doesmt appear to recognise at all when he does either so I don't think that would concern him.

    I just feel everything I do at the moment doesn't make a difference, I did recently change his bedtime from 7pm to 7.30pm, so he is usually asleep by 745pm, I recognise that this may sound selfish but if I push it back later I never get any time before I go to bed, my partner is up at 4am for work and I do nights and 13 hour shifts so its a rare couple of hours to ourself as he wakes from 10pm.:-(

    Thanks for your advice

Children
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