Meltdowns.... in sleep ?!?!?!?!?

[lisa2701]

Hi everyone,

 

I have a son who is 6. He is dx with ASD. He's been having a rough time of it lately. Schools been really tough for him this year (we're in the midst of trying to sort that out) and its having a knock on effect at home. His meltdowns have became SO much more frequent but also VERY violent. To the point I have bruises all over my arms from him biting me. Although he is only 6 is about the size of an 8 year old ish and has the strength of an Ox while in meltdown.

 

Well....

 

I have just went through to him as i could hear him crying. I went over to his bed and he instantly started kicking and punching me. He was VERY much asleep. So i decided to try wake him up, i tried the nice and gentle approach....still sleeping and kicking off, tried being more firm in waking him.... still sleeping and kicking off, I sat him up, and he was STILL hitting kicking etc and sleeping. Then he very quickly jumped out of bed and continued to attack me, and i seriously do think he was asleep at this point too. After fighting with him for a few minutes, i was just about to restrain him when he ran for the toilet, trying to lock the door behind him, which i managed to stop. He trashed the toilet in less than 30 seconds. But then, he seemed to suddenly become aware of what was going on, as though he woke up properly, and he just sobbed his wee heart out, wanting cuddled. I had to cuddle him back to sleep with him crying saying he was sad because of the bad dream.

 

This is the first time this has ever happened to us, and i must say i'm completely caught off guard with it. i am 99% sure he was sleeping the whole time until he started sobbing in the toilet. his normal reaction after a meltdown is to hate the person who was with him at the point of meltdown for the rest of the day...yesterday , that was me. But tonight it was different, he instantly looked for comfort. My heart breaks for him.

 

I was wondering if this is common? Suppose i now have images of midnight meltdowns from now on. It only lasted a total of 10 minutes ( a fraction of the norm) but its left me slightly shocked.

 

Lisa xx

[bid]

Two thoughts occur to me.

 

The first is that your son could be experiencing a 'night terror'.

 

The second thought is that if it were me I would see the GP just to be on the safe side and rule out anything like a night-time seizure.

 

HTH

 

Bid

[lisa2701]

Thank you bid.

 

i tend to agree with the night terror. He was dreaming something that was setting him off, that was for sure. I don't think it was a seizure as he wasn't just punching and kicking into the air and catching me, he was directing them at me and he was clearly angry. I think he was maybe between asleep and awake, he was maybe aware of me there, on some level, but still dreaming about whatever was going on in his head. If that makes any kind of sense? you know that way where you dream your alarms going off and then wake to realise that it actually is going off? that's what i think was happening. Hope that makes sense LOL. he's cried since but settled very quickly, so he's obviously still not very settled in his dreams.

 

xx

[bid]

Thank you bid.

 

i tend to agree with the night terror. He was dreaming something that was setting him off, that was for sure. I don't think it was a seizure as he wasn't just punching and kicking into the air and catching me, he was directing them at me and he was clearly angry. I think he was maybe between asleep and awake, he was maybe aware of me there, on some level, but still dreaming about whatever was going on in his head. If that makes any kind of sense? you know that way where you dream your alarms going off and then wake to realise that it actually is going off? that's what i think was happening. Hope that makes sense LOL. he's cried since but settled very quickly, so he's obviously still not very settled in his dreams.

 

xx

 

I'm sure you're right about it being a night terror, but if it keeps happening I would keep a record and still see your GP as there are very many seizure types that can present in very unusual ways.

 

Your GP might be able to give you some advice about night terrors anyway.

 

Bid

[Suze]

I can understand your concerns <'> , during times of extreme stress my son suffered a similar type of thing.I was woken by shouting , and went to his room, he was thrashing about in bed and crying, he then got out of bed and ran around his room shouting but making no sense, I tried talking to him but he took no notice of me , he flung himself on the bed and I cuddled him he was crying and began to calm but still was,nt really awake iyswim, , he eventually settled and went back to sleep.We have had a few of these incidents maybe one a week when he was really stressed out, sometimes he would run into our room shouting , we believe he was sleepwalking and saw the DR who prescribed melatonin as we had other issues with sleep at the time aswell.This worked and his sleep became more settled.We have,nt had a sleep walking incident for yrs now thankgoodness.

If anything though I think this new development for your son shows the extreme stress he is now under, which is a sad and worrying development , best wishes suzex.

[MelowMeldrew]

I've had the mother of all meltowns these last 3 days, he was hospitalised, went totally aggressive, hadn't slept for days and then exploded. That was just the start, on emergency dept assessment we were left in a small room on our own with our son kicking off for near 4 hours, before some turned up and then said they will keep him in for observation, I was awake 25 HOURS trying to keep him calm on my own, the nurses ran off and left me to it me,we are not allowed to handle patients personally....He slept for 2 hours only and only after sedatives were give 4 times,which had little effect, Drs came and went didn't want to know, ended up with a seniorsdr coming to me and stating you will have to take him home we mend bodies nor brains..... A social worker came, an specialist I called from the MH team, and I stood there while they argued with the hospital, to no avail, the dr dismissed the social worker, me, my son and the MH dr with "It is a social problem, not ours, you still have to leave..." I cannot believe I am living in 2010 frankly. I am given diazepam for 14 days after that ? NOTHING he is under 16 or something... If he has another meltdown they said don't call us...

[lisa2701]

Hi,

 

thanks for all your replies.

 

I already keep a note of all incidents at the moment as we are having problems with DS. He's having such a hard time at school (in mainstream) and whats happening is he's keeping himself collected (as much as he can, although he does shut down at school regularly) but then he is falling apart when he comes home. i am in the midst of trying to arrange an appointment with the school and his autism outreach worker so we can discuss further support, as currently he receives VERY little.

Recently his melt downs have become a LOT more regular, and more worryingly, very very violent. Currently i am covered in bruises all over my arms from him biting me during these episodes. Last night was just a total shock as he is on melatonin to help him sleep so he normally sleeps fairly sound. Could the melatonin add to the fact i couldn't get DS to waken do you think?

 

Melowmeldrew - i think it is ridiculous the way you were treated at hospital. How can they say having a child in that state of mind for so long is not something they have to worry about? i am glad the Social worker, and MH Dr came to your defence but i think its just a joke. As you say, we're in 2010, people are meant to be more aware and understanding.....particularly Dr's!!! hope he is feeling better now. i find meltdowns so hard, i desperately want to help but sometimes there is nothing you can do but give them time and space, in my DS case anyway. The meltdown my DS had on tuesday was pretty heartbreaking, he was angry and VERy aggressive, but he was also sobbing, a real pain felt sob, and all i wanted to do was comfort him, but there was no way i could look at him let alone touch him without it making him worse. I was enemy number one at that point in his mind. So sad to see them in such distress and be helpless. Last night was particularity hard as i felt as though if i could only wake him up he'd calm down, and of course he did, but it took for him to wake on his own, i couldn't seem to get through to him enough to wake him.

 

As for seizures, its something i will keep an eye on, if it happens again i will probably contact his paediatric Dr who specialises in ASD, and see what she thinks as she knows everything thats been going on lately.

 

 

Lisa xx

[MelowMeldrew]

Hi,

 

thanks for all your replies.

 

I already keep a note of all incidents at the moment as we are having problems with DS. He's having such a hard time at school (in mainstream) and whats happening is he's keeping himself collected (as much as he can, although he does shut down at school regularly) but then he is falling apart when he comes home. i am in the midst of trying to arrange an appointment with the school and his autism outreach worker so we can discuss further support, as currently he receives VERY little.

Recently his melt downs have become a LOT more regular, and more worryingly, very very violent. Currently i am covered in bruises all over my arms from him biting me during these episodes. Last night was just a total shock as he is on melatonin to help him sleep so he normally sleeps fairly sound. Could the melatonin add to the fact i couldn't get DS to waken do you think?

 

Melowmeldrew - i think it is ridiculous the way you were treated at hospital. How can they say having a child in that state of mind for so long is not something they have to worry about? i am glad the Social worker, and MH Dr came to your defence but i think its just a joke. As you say, we're in 2010, people are meant to be more aware and understanding.....particularly Dr's!!! hope he is feeling better now. i find meltdowns so hard, i desperately want to help but sometimes there is nothing you can do but give them time and space, in my DS case anyway. The meltdown my DS had on tuesday was pretty heartbreaking, he was angry and VERy aggressive, but he was also sobbing, a real pain felt sob, and all i wanted to do was comfort him, but there was no way i could look at him let alone touch him without it making him worse. I was enemy number one at that point in his mind. So sad to see them in such distress and be helpless. Last night was particularity hard as i felt as though if i could only wake him up he'd calm down, and of course he did, but it took for him to wake on his own, i couldn't seem to get through to him enough to wake him.

 

As for seizures, its something i will keep an eye on, if it happens again i will probably contact his paediatric Dr who specialises in ASD, and see what she thinks as she knows everything thats been going on lately.

 

 

Lisa xx

 

Well it was a situation I never thought existed. I always thought if the worst happens to your child and they have to go to hospital you will at least see professionals doing what they can, I found there was no NHS any more, I was totally shocked at it. What I saw was some sort of tiered health system that will help you if you have cancer a broken leg etc, but if there is a MH issue they don't want to know you and is isn't a health problem at all its some political football to play with and argue about. So in effect they said if my son has another episode, do NOT call for an ambulance or a Dr at the hospital. The MH team here said they will change the tabs to Respen (?) something but never gave me a prescription that will take another two meetings ! I'm a strong person myself, but they totally exposed me as vulnerable via my child by saying do not call us, it's your problem, I said it has always been my child and he's NOT the problem YOU are, you can't use my child as some political in fighting pawn over who does what. When a crisis comes it is then you find out what service really exists, I found there was none and my child's situation was not even a medical issue in a hospital, I was left wondering where do I go from here ? do I call for medical help or not ? Not, seems to be the answer. The entire medical opinion at a general hospital was Autism is not a medical issue they can address and it is a social one. Medical staff were apparently instructed NEVER to handle a patient too, even to prevent self injury, social services said the same,so, back to mum and dad then ! so how do they treat them ? They practically banned me leaving the hospital to help my wife who was diabetic, said you can't leave him here for us for even an hour. They relented after a heated discussion, but as I arrived home, a fax came I must go back again. A consultant never came for 6 hours after I returned and then they said they didn't want him on the ward, and there was nowhere else I could take him but home again. The stress of it all has made me totally exhausted and there is still the ongoing issue WHO is going to treat my child. ANother 6 meetings to talk about that I suppose. I told them today, I'm talked out with them.

[coolblue]

I've had the mother of all meltowns these last 3 days, he was hospitalised, went totally aggressive, hadn't slept for days and then exploded. That was just the start, on emergency dept assessment we were left in a small room on our own with our son kicking off for near 4 hours, before some turned up and then said they will keep him in for observation, I was awake 25 HOURS trying to keep him calm on my own, the nurses ran off and left me to it me,we are not allowed to handle patients personally....He slept for 2 hours only and only after sedatives were give 4 times,which had little effect, Drs came and went didn't want to know, ended up with a seniorsdr coming to me and stating you will have to take him home we mend bodies nor brains..... A social worker came, an specialist I called from the MH team, and I stood there while they argued with the hospital, to no avail, the dr dismissed the social worker, me, my son and the MH dr with "It is a social problem, not ours, you still have to leave..." I cannot believe I am living in 2010 frankly. I am given diazepam for 14 days after that ? NOTHING he is under 16 or something... If he has another meltdown they said don't call us...

 

The system is seriously broken. This shouldn't happen. Would your GP intervene for you?

 

cb

[Lynden]

Like Baddad we've had one or two episodes like this with L, normally when he is really anxious and stressed about other stuff. It is horrible though when they wake up from it and are so distressed. It only ever happens with him when he is really stressed though so we just try and help him through whatever we think is causing the stress as best as possible. I think you are doing the right thing by diarising it all as you might find what triggers his anxiety also.

 

MelowMeldrew - Not to be controversial as I possibly misread your post - was he in hospital anyway and was having a meltdown - or did you bring him to hospital because of the meltdown?

 

I do think you were treated atrociously by the hospital, but equally I don't actually understand what a normal hospital A&E could do other than sedate him?? If there isn't an underlying medical cause for his behaviour then really there isn't much A&E can do to help so surely it does become a social care /mental health issue.

 

Lynne

Edited October 14, 2010 by Lynden

[MelowMeldrew]

Like Baddad we've had one or two episodes like this with L, normally when he is really anxious and stressed about other stuff. It is horrible though when they wake up from it and are so distressed. It only ever happens with him when he is really stressed though so we just try and help him through whatever we think is causing the stress as best as possible. I think you are doing the right thing by diarising it all as you might find what triggers his anxiety also.

 

MelowMeldrew - Not to be controversial as I possibly misread your post - was he in hospital anyway and was having a meltdown - or did you bring him to hospital because of the meltdown?

 

I do think you were treated atrociously by the hospital, but equally I don't actually understand what a normal hospital A&E could do other than sedate him?? If there isn't an underlying medical cause for his behaviour then really there isn't much A&E can do to help so surely it does become a social care /mental health issue.

 

Lynne

 

He was taken in because there was a total breakdown and he was aggressive, I couldn't manage it. It is the first real meltdown I've ever seen that was an issue, but is now continuous and 24/7. I was treated appallingly by 11 drs I saw there over 24 hours, and they did not issue him with sedatives, 10 never examined him, and refused to help me calm him. I had a child in crisis and they made him and me worse, I was kept awake from 5.30am until 5 pm the next day near 41 hours, with not a single nurse or anyone helping me.. There is no system of referring an child that has lost total control, not even a stop gap to ascertain treatment, I and my child were just left, then told to go. I'll never phone for an ambulance again, or go to the hospital, they have made it clear it's 'my' problem... Even a social worker assigned to him would not speak up for us, I am considering asking he be replaced immediately. I don't care about their politics of mental and physical health, they did not respond to the basic need of a child. They contributed to more stress than there needed to be. That was 100% unacceptable, and uncaring. It is because health services won't talk to each other or work with each other. I'm no piggy in the middle for their politics. Once my child does get the right care, I am going back there and they are going to see how the media will react to their 'Care'. I'd certainly want two nurses carpeted and 3 doctors. It's worse than 3rd world care.

[bid]

Hi Melow,

 

Didn't they call the duty psychiatrist??

 

Bid

[MelowMeldrew]

Hi Melow,

 

Didn't they call the duty psychiatrist??

 

Bid

 

Indeed they did and he said the same as the other drs, autistics should not attend a general hospital even in an emergency unless it is a physical ailment. "We mend bones, not brains..." There is a clear line drawn with patients with autism and MH issues, they don't want them there. All they do is phone a social worker and it's 'their problem'. I now know where I can't go in an emergency, so where do I go when I do have one ? Are their specialist short stay hospitals/centres for MH/Autism about ? there are none here.... Seems the policy is simply to drug our children to be docile without ever offering therapy or even an assessment... There was nowhere they can refer them.. All I got was another 3 meetings, can't now be bothered to go... I don't want to talk to them anymore unless they are offering a service to us, I said tell me that, I'll attend, talk is cheap.

[Mumble]

It seems like two threads/issues have merged into one here - I wanted to reply to both but I'm going to separate out my replies so it's clear (I hope) whom and to what issue I am responding.

 

Night-time meltdowns:

I'm an adult so this may be different, but I have both night-terrors/nightmares (I know the two are different, I'm putting them together for ease here) and night-time seizures. I'd say that the main difference (both to me and observers) is awareness - I definitely know when I've had a nightmare/night-terror, either if I wake up during it or afterwards. It's also possible for someone to wake me up pretty instantly and although I may be a bit confused/scared/trying to assimilate everything, I am awake. With night-time seizures, I may have no awareness of them having happened at all, even though they can be quite violent - I was waking up with bleeding from a bitten tongue/lip or a nose bleed but to awareness of why it had happened.

 

I don't think it's possible to tell from your description exactly what is happening, though the difficulty getting him to wake up may be important (but may be attributed to melatonin - I don't know the effects of this, but know that some of my medication can make me very drowsy). I probably wouldn't classify it as a meltdown, because by definition they represent a loss of control, but if he was sleeping, he wasn't losing control. His reaction in needing comfort is also very different. I would suggest doing what others have said and keeping a record, if possible video an episode, and if it happens again or anything worries you, speak to your GP/Paediatrician.

 

***************************************************************************************************

Meltdowns, MH and A&E

 

I have to say, I'm a bit confused by this part/tangent to the thread.

 

A&E is designed for accidents and acute medical emergencies. They do cater for MH crises, where the individual is at imminent risk (i.e. suicidal/self-harm). They will always have access to a duty-psychiatrist in such cases. What A&E is not, is an alternative to other health services (despite many people using it this way).

autistics should not attend a general hospital even in an emergency unless it is a physical ailment.

Individuals with ASD can attend a hospital on the same terms as any member of society.

 

What did you expect them to do, especially in A&E?

 

If this had been developing over 3 days, what other services had you contacted?

 

What do you want to happen (and not 'services' - what specific services?)

 

I don't want to talk to them anymore unless they are offering a service to us, I said tell me that, I'll attend, talk is cheap.

How does an attitude like that promote positive discussion or help your son?

[MelowMeldrew]

It seems like two threads/issues have merged into one here - I wanted to reply to both but I'm going to separate out my replies so it's clear (I hope) whom and to what issue I am responding.

 

Night-time meltdowns:

I'm an adult so this may be different, but I have both night-terrors/nightmares (I know the two are different, I'm putting them together for ease here) and night-time seizures. I'd say that the main difference (both to me and observers) is awareness - I definitely know when I've had a nightmare/night-terror, either if I wake up during it or afterwards. It's also possible for someone to wake me up pretty instantly and although I may be a bit confused/scared/trying to assimilate everything, I am awake. With night-time seizures, I may have no awareness of them having happened at all, even though they can be quite violent - I was waking up with bleeding from a bitten tongue/lip or a nose bleed but to awareness of why it had happened.

 

I don't think it's possible to tell from your description exactly what is happening, though the difficulty getting him to wake up may be important (but may be attributed to melatonin - I don't know the effects of this, but know that some of my medication can make me very drowsy). I probably wouldn't classify it as a meltdown, because by definition they represent a loss of control, but if he was sleeping, he wasn't losing control. His reaction in needing comfort is also very different. I would suggest doing what others have said and keeping a record, if possible video an episode, and if it happens again or anything worries you, speak to your GP/Paediatrician.

 

***************************************************************************************************

Meltdowns, MH and A&E

 

I have to say, I'm a bit confused by this part/tangent to the thread.

 

A&E is designed for accidents and acute medical emergencies. They do cater for MH crises, where the individual is at imminent risk (i.e. suicidal/self-harm). They will always have access to a duty-psychiatrist in such cases. What A&E is not, is an alternative to other health services (despite many people using it this way).

 

Individuals with ASD can attend a hospital on the same terms as any member of society.

 

What did you expect them to do, especially in A&E?

 

If this had been developing over 3 days, what other services had you contacted?

 

What do you want to happen (and not 'services' - what specific services?)

 

 

How does an attitude like that promote positive discussion or help your son?

 

 

I found after 12 meetings in 7 weeks with nothing at all happening it was pointless attending more of them. It's total frustration. Services such as his social worker and even the mental health team we are supposed to be with, all left me to it, even standing alongside while I argued for help for my son.... contributing nothing at all. I won't go near my general hospital again. They made it clear there was nothing to do even in an crisis situation which is what I had. Try 41 hours of being told to get the hell out, while your child is in obvious mental pain, and no-one suggesting anything else. I get the impression you are blaming me ? surely, that is the system outlook, it's always something the parent hasn't done ? I can tell you my tolerance level is very good, I have NEVER got to a point in 16 years where I thought I would ever have to call the 999 service, now I'm totally convinced I won't again, after being forced the once. I had no other contact despite the 'service provision' he is listed with and despite them constantly updated. I wasted 16 years of my life using these people. You can well understand how some parents get to the point of total exhaustion. That's what the system asks for apparently, If I fall over then they have to act, I didn't fall over quick enough. The resident Psychiatrist gave me a lecture on hospital politics, while my son was screaming alongside him....pardon me if I offended him by stating I couldn't give a fig basically, HIS Problem not mine, what the hell use is he ? There is a child needing help here. It's totally frightening you are faced with an NHS system that doesn't want ill people. You have no idea how many people I had to consult this week 19 professionals, not a single one did a thing. I'm going to bury the hospital after I do sort the support out.

[Karen A]

Indeed they did and he said the same as the other drs, autistics should not attend a general hospital even in an emergency unless it is a physical ailment. "We mend bones, not brains..." There is a clear line drawn with patients with autism and MH issues, they don't want them there. All they do is phone a social worker and it's 'their problem'. I now know where I can't go in an emergency, so where do I go when I do have one ? Are their specialist short stay hospitals/centres for MH/Autism about ? there are none here.... Seems the policy is simply to drug our children to be docile without ever offering therapy or even an assessment... There was nowhere they can refer them.. All I got was another 3 meetings, can't now be bothered to go... I don't want to talk to them anymore unless they are offering a service to us, I said tell me that, I'll attend, talk is cheap.

 

The Mental Health Foundation Trust for my area has a clear documented policy and procedures in place which advise attendance at A and E with documented access to a duty psychiatrist as needed.

 

When many major emergency conditions are known to exhibit behavioural symptomes [for further information I have provided an extremely detailed list on a thread about anger and diagnosis]I think it is unhelpful to suggest that anyone should not attend A and E.The only person qualified to decide the origins of an ailment and whether it is physical is a doctor.

In any case the vast majority of mental health conditions are physical in origin.

Edited October 16, 2010 by Karen A

[lisa2701]

Hi,

 

Mumble - i totally get what your saying about not classing it as a meltdown. Whatever it was that happened presented itself very very similar to my sons meltdowns, except he seemed to be asleep, hence it was the easiest way for me to describe what happened. I'll try be a bit clearer of what happened...

I heard him crying so i went through to see if he was ok, he was thrashing about in his bed, as though fighting something in his dreams, naturally i tried to wake him, very gently at first, but his only response was to start directing his punches and kicks at me. SO i took a slightly firmer stand on trying to wake him, but he was still crying, breathing through his teeth and kicking and punching me. So i finally sat him upright thinking that would do the trick of waking him... but it didn't. After a few minutes of this going on, he got out of bed..seemingly still asleep, and started to, what seemed like deliberately, direct him punches and kicks at me. Eventually he ran for the toilet, where i knew he was going to lock himself in, so i made a dash for it and managed to stop him closing the door. i threw a towel over the door to stop him closing it so i could back off and let him calm down without me in the toilet. So obviously at this point i couldn't' see him as he'd shut the door as much as it would go, I could hear him growling (hate to use the word but that's what its like) and then suddenly he seemed to calm down and started sobbing. That when i went in and discovered he'd pulled everything down off shelves etc (which i cold hear him doing but there was nothing to himself with) and he was awake and upset. usually in the comedown of a meltdown he's still very much no contact kind of thing, but he was more than willing for a hug when i offered it. He then spent a wee while trying to get back to sleep but crying saying he was sad and not allowing me to let him go. I don't think melatonin would've caused the inability to waken him. This may or may not have made things clearer but if it had i'd love your opinions on what was going on.

 

he has been showing signs of being in a great deal of stress lately. It all started during the summer holidays, where he experienced a meltdown in which he became violent for the first time. He was just out of sorts kind of thing for the holidays, wanting to eat more than usual, not wanting to leave the house (even to go to familiar places etc). Once the schools went back things just got much worse. He now wets himself regularly at school (very unheard of for him), he is refusing to put pen to paper, he is refusing to go into class, he shuts down completely unable to communicate in any shape or form. I was called to school one day when he wet himself and then shut down, in the end i had to carry him to the toilets, where he lay completely unresponsive while i changed him like you would a tiny baby(much harder to do to a 6 year old who is the size of an 8 year old). At home we've had several incidents where he's went into meltdown becoming extremely violent, I am currently covered in bruises all over one arm as his last one (last Tuesday)he repeatedly bite, throw things at me, punch and kick me. He still doesn't want to leave the house unless completely necessary. He's taken a dislike to my gran, who he see's regularly and used to be close to, he now refuses to look at her or talk to her. He completely ignores her if she speak to him. His whole personality has changed. Its like... 90% of the time we used to have a happy, very loving, well mannered, content, relaxed little boy with slight glimpses of the anger or stress. Now its like a complete reversal, we get 90% of him angry, stressed and unhappy with regular violent meltdowns and only glimpses of happiness and loving.

 

I have already had an appointment with the school but nothing major has come of it. i have another one booked for the 4th of november and this time his autism outreach worker is coming as is his SALT to make opinions known, which is really that the class is unsuitable for him, very cluttered, cramped, noisy, unorginised. Plus the school have agreed to strategies to help him with the hustle and bustle of getting down stairs at break etc, but then made a fleeting comment to me about how, schools being schools they don't always mange to do it. I was furious. So thats when i contacted his outreach worker who agreed with me that it was unacceptable that they were able to do it some days but not others, so she is coming with me to the meeting.

 

Lisa xx

[lisa2701]

It happened again tonight. That being said, although the behaviours were similar it didn't seem as intense tonight. Still had trouble getting him to wake though.

[Mumble]

usually in the comedown of a meltdown he's still very much no contact kind of thing, but he was more than willing for a hug when i offered it.

 

Still had trouble getting him to wake though.

 

Hi Lisa, sorry to hear this. I've picked out these two bits because to me they're the bits that suggest this is different to a meltdown; they're also the things that are different for me too. When I have a meltdown although it can be helpful to know that there's someone nearby, I absolutely don't want any physical contact.However, with medical stuff, what I really crave is human comfort/contact. The waking/not-waking thing - I was thinking about this and wondering if you'd ever tried waking him during the night (as opposed to getting up in the morning) before so you had an idea of how different his behaviour and ability to wake up on these occasions was?

 

I'd suggest documenting these episodes and possibly speaking to your GP. I'd probably be tempted not to discuss it in comparison to a meltdown but just to state what's happening and when so that possibly important issues aren't ignored and put down to him being Autistic.

[lisa2701]

Hi mumble

 

Thanks for your reply. I agree with you that these haven't been a meltdown and as such when i speak to someone about them i will not refer to them as such. I haven been keeping a diary of everything going on lately anyway so i have logged these in. Although i have never tried to waken him during the night, i have went in to turn off his light and tuck him in etc at night and accidentally woken him by making too much noise. He's never reacted this way in that instance. I was thinking that when it happens again i might try not waking him and see how it plays out, i wonder if he'd settle back down into a more relaxed sleep again without me interfering?

 

Lisa xx

[Karen A]

It happened again tonight. That being said, although the behaviours were similar it didn't seem as intense tonight. Still had trouble getting him to wake though.

 

Hi.

Is that trouble getting him to wake in the morning or after one of the episodes you desrcibe ?

If that is the case I think it is certainly worth keeping a record and pushing your GP for an apointment for further investigations.

A friend of mine has a son with AS.She described to me a pattern where her son was having unusual episodes during the night .He was also very grumpy and tired the morning afterwards.For some time it was thought it was ASD related.However following further investigations after I encouraged her to push for them he turned out to have bben having nocturnal seizures.

 

I was a nurse and I know that bid has specialist knowledge related to her work.The fact that we both think nocturnal seizures are a possibility may suggest it is worth investigating the possibility.

 

Meltdowns usually happen in the day time when a person is awake in response to a particular trigger rather than happening during sleep when the child is not aware.

Whilst what you describe could be night terrors I would not pressume this to be the case unless a person with specialist knowledge had observed one and/ or an EEG had ruled out it being a seizure.

 

Some people can be very agitated and upsett after a seizure.

Karen.

[MelowMeldrew]

Hi mumble

 

Thanks for your reply. I agree with you that these haven't been a meltdown and as such when i speak to someone about them i will not refer to them as such. I haven been keeping a diary of everything going on lately anyway so i have logged these in. Although i have never tried to waken him during the night, i have went in to turn off his light and tuck him in etc at night and accidentally woken him by making too much noise. He's never reacted this way in that instance. I was thinking that when it happens again i might try not waking him and see how it plays out, i wonder if he'd settle back down into a more relaxed sleep again without me interfering?

 

Lisa xx

 

My son hardly ever sleeps, 4 hours would be his maximum, the rest of the time he is awake shouting and yelling or walking around in the dark... He is dog tired before he even starts school, and is having meltdowns there too... I have to sleep in the day time to ensure his safety at night....All I've had is meetings, about more meetings... and the NHS and social services arguing who does what, at present that means nothing at all, or for the foreseeable future either...

[lisa2701]

Karen - I have trouble waking him during one of the episodes (sorry not sure what to call it at the moment) and even when he has his eyes open i'm still not convinced that he's actually there. That being said, both times after 5 minutes or so of trying to wake him he's opened his eyes, slid (literally) out of bed and then got to his feet, which is why i hadn't though of a seizure. Thankfully it has only happened twice, but maybe as you said it is worth getting checked out. Is it best to go to my GP or would i be better going to the paediatric ASD specialist who knows about everything that's been going on lately?

 

Melow - Have you considered something like melatonin, it has been a life saver for us. My son would go to bed at 8 pm but it would take until 12 - 1 am before he'd fall asleep and then he'd be back up during the night 2 or 3 times and then he'd get up at 6 - 7 am again. He's six in one weeks time and the last two month has been the best sleep we've had since he was born. He was put on melatonin, it doesn't drug him, simple helps him relax, you can actually see him unwind. He does admittedly still get up once every night, but he sleeps from 9 pm to 7 am with only one sleep disturbance....well until the "episodes" started, it has made a big difference.

 

Lisa xx

[Karen A]

Karen - I have trouble waking him during one of the episodes (sorry not sure what to call it at the moment) and even when he has his eyes open i'm still not convinced that he's actually there. That being said, both times after 5 minutes or so of trying to wake him he's opened his eyes, slid (literally) out of bed and then got to his feet, which is why i hadn't though of a seizure. Thankfully it has only happened twice, but maybe as you said it is worth getting checked out. Is it best to go to my GP or would i be better going to the paediatric ASD specialist who knows about everything that's been going on lately?

 

 

 

 

Hi.

If it were me I would probably talk to the paediatric ASD specialist especially if they are a paediatrician.However if you know the GP well you could always talk to them first.It may be that these episodes turn out to be night terrors.However I think any good professional would not feel you are over reacting if you asked for an opinion.

Karen.

[lisa2701]

Thanks Karen, I must admit I am very uneducated about seizures, my perception of seizures what of violent convulsions. I have spent the last hour or so, reading about and watching clips on you tube of seizures and its been eye opening. I had no idea there was so many different kinds of seizures. Admittedly it has brought a slight sickly feeling to the pit of my stomach. I am going to call my sons ASD DR tomorrow and discuss it with her, and hopefully she can point me in the right direction. xx

[Karen A]

Thanks Karen, I must admit I am very uneducated about seizures, my perception of seizures what of violent convulsions. I have spent the last hour or so, reading about and watching clips on you tube of seizures and its been eye opening. I had no idea there was so many different kinds of seizures. Admittedly it has brought a slight sickly feeling to the pit of my stomach. I am going to call my sons ASD DR tomorrow and discuss it with her, and hopefully she can point me in the right direction. xx

 

Please try not to worry too much.In many people seizures can be very well controlled with medication and some children stop having them as they get older.It may not even be that.I just think it is worth obtaining a Drs opinion.

 

Karen.

Edited October 21, 2010 by Karen A

[lisa2701]

Karen - Yes i agree its worth getting looked at. Especially as i remembered there is epilepsy on both sides of my family last night. Grand parents on both sides have it. I have called his Dr but she wasn't in so i am waiting either on a call back or I will try calling her again later this afternoon. I'll let you know once i've spoken to her what she says.

 

Thanks again,

 

 

Lisa xxx

[lisa2701]

Just thought i'd up date now that i've spoken to the Dr. She doesn't think it sounds like seizures, she thinks he's having sleep disturbances. She has said to keep a diary of them, and in future to keep an eye on the colour of his lips during an episode, but not to try to wake him. So what exactly is a sleep disturbance though? Just a nightmare? It doesn't make sense that i can't wake him.

 

xx

[bid]

Just thought i'd up date now that i've spoken to the Dr. She doesn't think it sounds like seizures, she thinks he's having sleep disturbances. She has said to keep a diary of them, and in future to keep an eye on the colour of his lips during an episode, but not to try to wake him. So what exactly is a sleep disturbance though? Just a nightmare? It doesn't make sense that i can't wake him.

 

xx

 

Hi again Lisa,

 

If these episodes continue and you are unhappy, you can always ask your GP for a referral to a paediatric neurologist who will be familiar with the full range of seizure types.

 

Would it be possible to video such an episode, as any dx of epilespy is based on taking a full history, especially seizure observation.

 

Bid

[lisa2701]

Thanks bid, I think what i'm going to do is wait and see if it happens again and if it does just observe everything thats going on and as you said i will try get a video of it. Take notes and if i'm still concerned after that then i'll go to my GP and ask her opinion.

 

Thanks

 

Lisa xxx

[bid]

Thanks bid, I think what i'm going to do is wait and see if it happens again and if it does just observe everything thats going on and as you said i will try get a video of it. Take notes and if i'm still concerned after that then i'll go to my GP and ask her opinion.

 

Thanks

 

Lisa xxx

 

I hope you can get to the bottom of these episodes as anything like this, whatever the cause, is very distressing to witness <'>

 

Bid

[lisa2701]

Thanks Bid, We've went a whole week without another episode (that i'm aware of of course) so i'm keeping my fingers crossed that it continues this way.

 

Thank you everyone for your support.

 

Lisa xx

[MelowMeldrew]

Hi everyone,

 

I have a son who is 6. He is dx with ASD. He's been having a rough time of it lately. Schools been really tough for him this year (we're in the midst of trying to sort that out) and its having a knock on effect at home. His meltdowns have became SO much more frequent but also VERY violent. To the point I have bruises all over my arms from him biting me. Although he is only 6 is about the size of an 8 year old ish and has the strength of an Ox while in meltdown.

 

Well....

 

I have just went through to him as i could hear him crying. I went over to his bed and he instantly started kicking and punching me. He was VERY much asleep. So i decided to try wake him up, i tried the nice and gentle approach....still sleeping and kicking off, tried being more firm in waking him.... still sleeping and kicking off, I sat him up, and he was STILL hitting kicking etc and sleeping. Then he very quickly jumped out of bed and continued to attack me, and i seriously do think he was asleep at this point too. After fighting with him for a few minutes, i was just about to restrain him when he ran for the toilet, trying to lock the door behind him, which i managed to stop. He trashed the toilet in less than 30 seconds. But then, he seemed to suddenly become aware of what was going on, as though he woke up properly, and he just sobbed his wee heart out, wanting cuddled. I had to cuddle him back to sleep with him crying saying he was sad because of the bad dream.

 

This is the first time this has ever happened to us, and i must say i'm completely caught off guard with it. i am 99% sure he was sleeping the whole time until he started sobbing in the toilet. his normal reaction after a meltdown is to hate the person who was with him at the point of meltdown for the rest of the day...yesterday , that was me. But tonight it was different, he instantly looked for comfort. My heart breaks for him.

 

I was wondering if this is common? Suppose i now have images of midnight meltdowns from now on. It only lasted a total of 10 minutes ( a fraction of the norm) but its left me slightly shocked.

 

Lisa xx

 

I think 10 minutes very tame (Sorry !), I have at least 2 or 3 HOURS every night, and 6 in the day despite medication, as I type I have been awake since 2:30am, 6:30am before he went to sleep, me ? no such luck ! We haver asked for immediate respite, after 8 weeks we can't cope with it, but worse neither is my son. MY son doesn't punch us but is completely out of control running into walls, doors yelling and screaming all night just for starters.. He hasn't sat in a chair for months, constantly pacing, running....I couldn't contain him last night, I feel I had no choice but to ask for help.

[smiley1590]

has petit mal epilepsy been investigated looked into as this can make you go into trance like state? as epilepsy can be common neurological disorder with A.S.D ....

 

XKLX

[bid]

has petit mal epilepsy been investigated looked into as this can make you go into trance like state? as epilepsy can be common neurological disorder with A.S.D ....

 

XKLX

 

Just to clarify, the term used these days for this type of seizure is an absence seizure...but they last literally seconds, not a long episode as described by Lisa.

 

Bid

Edited November 1, 2010 by bid

[trekster]

The Mental Health Foundation Trust for my area has a clear documented policy and procedures in place which advise attendance at A and E with documented access to a duty psychiatrist as needed.

 

When many major emergency conditions are known to exhibit behavioural symptoms [for further information I have provided an extremely detailed list on a thread about anger and diagnosis] I think it is unhelpful to suggest that anyone should not attend A and E. The only person qualified to decide the origins of an ailment and whether it is physical is a doctor.

In any case the vast majority of mental health conditions are physical in origin.

 

They didn't help me back in 2004 when i attempted suicide. i dont understand how something that is a mental health condition can be physical in origin?

[trekster]

My son hardly ever sleeps, 4 hours would be his maximum, the rest of the time he is awake shouting and yelling or walking around in the dark... He is dog tired before he even starts school, and is having meltdowns there too... I have to sleep in the day time to ensure his safety at night....All I've had is meetings, about more meetings... and the NHS and social services arguing who does what, at present that means nothing at all, or for the foreseeable future either...

 

Have you tried making official complaints to PALS (about NHS), Social Services or your MP?

[lisa2701]

MelowMeldrew I think your situation sounds very stressful, i think that you done the right thing in asking for help. Have they tried things like melatonin? My son is on this to help him get to sleep at night, and its been a life saver. He still wakes several times a night but at least he getting to sleep at a decent time in the evening, and he rarely wakes for very long during the night these days. that being said, when he was younger he barely slept. I know they can give long acting melatonin though that helps to keep them sleeping. maybe that's an avenue worth looking at if you haven't' done so already?

 

As for the episodes lasting ten minutes, i did sense a slight irritation in your tone to that... although I may be way off here and if I am I have to apologise. I would just like to make clear that the duration of the episode wasn't what was concerning me, but more that they were a new thing for my son to be having in his sleep. "Meltdowns" during the day are very different, often lasting hours and even once he's regained control the least wee thing can send it off again.

 

I fully appreciate that sleep deprivation is extremely stressful, as i said my son barely slept until more recently, its only been the last three months he's been on melatonin to help him get to sleep at night, before that he'd be up until VERY late, often still wide awake when my husband and i were going to bed at midnight and then would get up several times between that and 7 am.

 

I hope that you get help and a better nights sleep very soon. xxx

[lisa2701]

sorry, just re read your message and noticed you said your son is on medication. What can i say, its almost 3 am and I can't sleep. The irony. I do hope you get a quick response to your request for help. xx

[JsMum]

another thing to maybe note down is a Food diary.

 

The reason I say this is because some food do trigger night terrors, for example its highly recorded that cheese can attribute to nightmares, also to cancel out HyperGlycemia and to determine if there is any issues with dehydration.

 

How ventalated his bedroom, what is the tempreture of his bedroom, what bedding, quality of matteress all these can have a very significant change to sleep performance, another thing we have been studying is light therapy too so ensure his bedroom lighting replicates a good sleeping zone, dimmed lights, soft lighting for example.

 

I would ensure he has a drink before bed such as milk or water, or a very diluted drink but ensure no artificial sugars as again this can cause great distuption to the body.

 

another cause for Js night terriors was material in video and gaming and even the TV, for example J watched the news about a medical problem and he freaked out, later that night he had a night terror.

 

I am only going throw previous issues with my own son, but from reading your post your son sounds like he is extreamly anxious and stressed due to his needs not been met at school and insuffiecient support at home and the stress is showing in sleep disturbances.

 

Is there anyway of video recording the night terrors.

 

JsMumx