Sooze2

Thanks Jsmum. We saw the consultants dogs body (can't remember what they call them!) yesterday and he was lovely. He is going to ask her and my gp if they will referr DS to the sleep clinc, there is one in Bristol. In the mean time he has doubled his menatonin to 4mg - which is great but I promptly lost the prescription so will need to get another - I had a lot on my mind and was trying to act normal! Hopefully they will give me another script because getting DS's meds is like going underground to get class A drugs here and they may not beleive that I lost the scipt but may think I have sold his Concerta which was also on it!!!! He sugested that it may be that the concerta is wearing off too soon and he is getting a bit hyper before bed and so that is why the Menatonin is not working very fast - I thought that sounded good. He never has caffine and hates chocolate, only has sweets once a week (hates me for it but has good teeth! ) god I'm mean! Anyway we'll see how it goes. Things will probably go haywire now anyway because my DH left me this morning - hey ho!

She said that they can't give a higher dose last time but I will ask again tomorrow. x

My son has asd/adhd and I found all the fish oils made him very very hyper, especially those ones with orange in (I can't bear to recall the reaction he had to those!) Is your son wild and hyper in the evening during the weekends and holidays or is it just after school? Is he like it at school? My son was hyper all the time but far far worse after school partly due to being stuck in all day and the other part due to him not coping and zoning out at school and being unable to follow anything that was going on. He has been medicated for a year now and he is so much happier and it has changed his life to the point where he asks for his meds because he feels the positive difference they make to his life, he was very unhappy before. I'm not sujesting you medicate - school and consultant had to persuade me to do it to be honest because I was against it (scared of it!). His consultant did say the same as Baddad - it was an unknown quantity what effect medicating would have on him because she said that if his ADHD was crontrolled by the drug his ASD may have come more to the fore and he may actually appear much more Autistic and different to his freinds which could have a negative effect! What she said has happened but to very very a small degree but he is now feeling more included in life and has even been taking part in a majour theatre production in the local Secondary School (he is primary) for the last few months which is totally incredible considering before leaving the house at all caused him trauma! He is on a low dose which has changed his life in an imensely possitive way, because he now copes and can actually listen first rather than meltdown first which is great. Sorry, I'm rambling and I know this isn't what you asked about but I thought I would reasure you that medicating isn't always a bad thing. I felt that I had failed as a parent when the consultant sujested it (told me he had to have it!) the second time because I don't beleive in medicating for anything - I was very very unhappy about the whole thing. hth

I did the test based on someone I know Aspie Score was 130 of 200 neurotypical score was 65 of 200 I had to say I don't know to some questions it said you are likely an aspie So for those in the know, what does that mean in terms of - what am I dealing with? It was for an adult and things have been hard and seem to be getting harder. I can't really say anymore than that....

Thats exactly the same for me!! I am sure it was actually my brother that told me I was adopted because I don't remember being told about it but I suddenly changed when I was about 4 according to my cousins. My brother told me he told me, which would n't have been in a nice way but my Dad always talked about it as if it was totally normal and very factually. I approached telling DS about his diagnosis in the same way, he knew he was different he knew he was struggling and getting told off all the time for what he thought was no reason so I told him before we went to all the appointments that we were trying to find out exactly what he found hard so he can get some help with it all. He was all for it because he was a pretty unhappy boy by then.

Does anyone else have family who refuse to accept diagonosis, or indeed that there is any problem at all? What problem? There is no problem with my son at all, I should just get him to stand outside the front door for a while and he will soon behave - it worked with the other grandchildren and her own children. I did put the mother in laws advice into practice once and luckily I went to the front room window to make sure he was still there and he was gone - I found him in the park! He had just turned 3. He was supposed to be too scared to run away. Or I could smack him or lock him in his room - "didn't do you any harm, parents are too soft these days". ADHD is just a name people with naughty kids made up and they give them drugs because they are too lazy to discipline them - "actually ADHD was first recognised in 1845 Dad" - don't be so rediculous - sculks off to look at something very impotant in the garden etc etc etc etc Its ok though - he's polite and he eats well, thats the main thing and we have all managed to avoid talking about anything real for the whole of our lives so we don't have to face up to the reality of anything. Dh accepts it now, but up till about a year ago he thought everything DS did was normal because he seemed just the same as he was as a child........................................ He can't cope with him but thats normal! So there is no support at all, just a very mad woman laughing insanely in the middle of the night Hugs for everyone. I am totally sure ASD and the like are inherited - how can there be so many people with a diagnosis or with children with a diagnosis that have so little support, perhaps it's a little like looking into a mirror for some members of the family and they just don't know how to deal with it. I know DS gets a quite few things from both me and DH - lack of sleep definately from me etc etc.

HI Julie, thanks for that. DS had his addenoids out when he was 5 (along with grommits in) because he was still drooling a lot and also snoring terribly, didn't help him sleep but did stop him drooling and snoring so not a bad result - 2 out of 3.... Did they put monitors all over your daughter and how did she manage to get to sleep wearing them? We have the same problem, with DS in that he can't switch his brain off and it is still wirring while he is asleep! We used to say that the only reason he slept at all was because his body was so tired even if his brain was still awake!

I am hoping someone will say yes to this question because I have asked for DS to have a medication review (yes I had to ask! ) because his sleep is becoming a problem again. He takes 2mg of menatonin every night which is taking longer and longer to work and now he is not getting to sleep till around midnight again and a bit of sleep talking is creeping back. I am very concerned that soon I will be back to staying up at night to stop him sleepwalking around the house and screeming like a banchie at all hours! Witout the pills he can hardly sleep at all, he also takes concerta xl for ADHD which I think needs upping but that is for another post! The consultant who prescribed the menatoin said that there may be a risk of it causing infertility with long term use so I would really like to find out why he can't sleep so we can make an informed choice about the long term treatment of this rather than accepting the first thing that is offered. I have done an internet search and it turns out that our local hospital do sleep clinics - I think it seems strange that it hasn't been sujested to us by the pead before but there you go! Thanks in advance Suex

Darling Sally, I really don't know what to say. You have given me such great advise to my problems and I haven't got any for you so I am sorry. All I can do is offer a few of these <'> <'> <'> <'>

I think you were lucky Chris, I think the care we all get is mostly down to where you live. All my area seems concerned with is a diagnosis (if you push for it and getting someone to talk to you is like speeking on a telephone AFTER its been disconnected!) and to be put on meds then discharged. This is what has happened with us, the CHAMS O/T has now discharged DS which I only found out about when I phoned her the other week for advise, her only aim was to help with the initial diagniosis and make sure he was no longer throwing chairs in school so once he was medicated and so easier to deal with her job was done - period! My freind in Cornwall has a boy of 18 months who we all have concerns about and a SENCO attatched to his nursery is referring him to a pead for assement with a view to looking into Autism. All this has happened within less than 2 months! It took 9 YEARS to get help for my son who she says was worse than her boy by a long way and I live in Devon - the county next to her - it really is a post code lottery!

Parent Support lent me a brilliant book to read to siblings called GWERN. I read it to all of them together inclunding ds who has ASD and it really did a good job. The book has very few words but it summed up DS very very well and I said that if there has been books written about Autism then there must be loads oand loads of people with it otherwise no one would buy them I have told him Autism is very common and that it doesn't meen there is something wrong with him but that he thinks differently sometimes which is why he knows so much about so many things which is brilliant - he loves to read and research cars and facts. He also has ADHD and I'm afraid I told him that if he was to have anything that is probably the coolest thing to have! Probably not very good for me to say but his main aim in life is to be cool and for him having to take meds to calm him down meant that he wouldn't be a mad and crazy boy - which is what his friends liked about him so I had to explain it all in a way that actually made him think he was cool. Anyway, I hope this helps a bit. I feel that its best to be honest but tailor it to your child.

That is a very interesting comment to me because one of my 7 year old twins who is very like my ASD son in so many ways does exactly this - she will say she is tired and put her thumb in her mouth and cuddle in or zone out as soon as something she can't cope with happens especially socially! Today she has been very hard work and I have been thinking more and more about seeing about getting her assessed, I have been for a long time really but the thought of going through it all again scares me rigid! Don't know why! Anyway - Sally, I did a post containing the same thing recently - School and the head are saying that DS's innability to concentrate etc are due to his lack of sleep. He has ADHD and ASD and does have a sleep problem for which he takes menatonin so he sleeps 10 hours per night. The head said 10 hours isn't enough but last night I was reading about sleep dissorders on a website attatched to a hospital (so reliable) and it stated that for a child of 10 the ideal amount of sleep is 9.5 - 10 hours. I personally feel that either our kids are bored at school because the lessons are - well - boring or their support isn't perferming properly. Or it couldbe that they are the type of kids that just find school boring and would rather be somewhere else which at lot of NT kids feel too. Schools don't seem to allow for different personalities and need to blame SOMEONE for the the reasons why they can't get through to the child. Perhaps its a personality issue - the teacher and child don't get on like DS and a certain teacher who does art and handwriting for example - very few of the children like her and I have been told she has a very dry sence of humour that DS probably doesn't understand - why 99% of the other kids don't like is not known though Sue

Just wondering, has anyone's child ever been to a sleep clinic? Would it be a good idea to find out about this rather than just keep him on drugs indeffinately? When I asked my old GP about it she basically told me to go away but Ive changed now so it may be worth an ask eh

I would say yes. There is a very good reason why I am here at this time of night and it is because I have run out of menatonin and my son is still up! My son started taking it when he was almost 9 and the results were amazing. It does take an hour or 2 to work but it has stopped him from sleepwalking and stopped his terrible night terrors so any sleep he gets is quality sleep rather than disturbed, restless, short lived sleep.

Well. it's nearly 2am and I've just checked DS before going to bed myself and he is still awake! I put my head around the door, was about to go in and turn his TV off (only ever used for the playstation) and he is wide awake watching a DVD with his freind who is sleeping over sound asleep next to him. He is usually asleep around 10, I turned the light off at 11.30 due to freind staying and lots of anticts going on I let them stay up. Last night he was still awake at 12.30am and woke at 7.30 am so around 6 hours sleep was had IF he went to sleep when I turned his light off! He should have been out for the count as soon as his head hit the pillow tonight really eh!? He hasn't had his sleep meds for the second night running due to me forgetting to pick the prescription up, I knew there was something I had to do on Friday............... Well at least I now know they work, DH thinks they don't due to him still taking ages to sleep but is usually off to la la land by 10.30 at the latest. Boy are we all going to suffer tomorrow! Had to tell someone since I'm still up. Must go and buy him some Medised tomorrow so he can sleep. It just shows that the Head Teacher of his school is delusional if he thinks that DS having 10 hours sleep on medication is not good and he should have more! 10 hours is a mircle compared to this and this is how it was for the first 9 years of his life. Now I remember why I have now got a sleep dissorder of my own