Sleep

[tebald]

My son (13) has been on 5 diff sleep meds and I still can't get him to
sleep.

His first 11 yrs he didn't sleep at all and I blamed myself because I
didn't know young children could have sleep problems like adults can.
He was dx'd with AS at 11.

When I realized Aspergers I tried Melantonin. Wonderful! He slept I
slept.

Now two years later he is not sleeping. We have tried clonidine,
ativan, hydroxine (2 diff doses) benydryl (2 diff doses) and
clonzapem.

Some of these heavy duty stuff doesn't affect my child. He can stay
up for 48 hours at a time.

He cycles. He will get his days and nights mixed up.

I just want a normal cycle that can help him go to school.

BTW we hired an atty and won a settlement.

Any ideas?

Lainie

[nickie{D}]

Post by tebald
My son (13) has been on 5 diff sleep meds and I still can't get him to
sleep.
His first 11 yrs he didn't sleep at all and I blamed myself because I
didn't know young children could have sleep problems like adults can.
He was dx'd with AS at 11.
When I realized Aspergers I tried Melantonin. Wonderful! He slept I
slept.
Now two years later he is not sleeping. We have tried clonidine,
ativan, hydroxine (2 diff doses) benydryl (2 diff doses) and
clonzapem.
Some of these heavy duty stuff doesn't affect my child. He can stay
up for 48 hours at a time.
He cycles. He will get his days and nights mixed up.
I just want a normal cycle that can help him go to school.
BTW we hired an atty and won a settlement.
Any ideas?
Lainie

I'd be really interested if anyone has cracked this one. My 28 year old
son is still hamstrung by sleep irregularity. He seems to have a cycle
of about 25 or 26 hours and there are regular times when he is up nights
instead of days. He tends to do a "reset" by having an extra long day
and/or an extra long sleep every so often but I despair of his ever
being able to keep regular commitments.

At school he used to cope most of the time, but he had difficulty
getting to sleep at night. I think he just read quiety in bed as he
wasn't disruptive of my sleep then. He wasn't diagnosed until he was 21
after he'd been away to university and failed to cope there. And still
it was two years after he came home before anyone thought to have him
assessed. He has an Aspergers diagnosis.

I tend to the view that letting him regulate his own sleep is best for
him physically, but of course it's so disruptive of his life.

Schools and workplaces find it difficult if not impossible to cope with
that kind of thing.

nickie

[Canth]

Post by nickie{D}

Post by tebald
My son (13) has been on 5 diff sleep meds and I still can't get him to
sleep.
His first 11 yrs he didn't sleep at all and I blamed myself because I
didn't know young children could have sleep problems like adults can.
He was dx'd with AS at 11.
When I realized Aspergers I tried Melantonin. Wonderful! He slept I
slept.
Now two years later he is not sleeping. We have tried clonidine,
ativan, hydroxine (2 diff doses) benydryl (2 diff doses) and
clonzapem.
Some of these heavy duty stuff doesn't affect my child. He can stay
up for 48 hours at a time.
He cycles. He will get his days and nights mixed up.
I just want a normal cycle that can help him go to school.
BTW we hired an atty and won a settlement.
Any ideas?
Lainie

I'd be really interested if anyone has cracked this one. My 28 year old
son is still hamstrung by sleep irregularity. He seems to have a cycle
of about 25 or 26 hours and there are regular times when he is up nights
instead of days. He tends to do a "reset" by having an extra long day
and/or an extra long sleep every so often but I despair of his ever
being able to keep regular commitments.
At school he used to cope most of the time, but he had difficulty
getting to sleep at night. I think he just read quiety in bed as he
wasn't disruptive of my sleep then. He wasn't diagnosed until he was 21
after he'd been away to university and failed to cope there. And still
it was two years after he came home before anyone thought to have him
assessed. He has an Aspergers diagnosis.
I tend to the view that letting him regulate his own sleep is best for
him physically, but of course it's so disruptive of his life.
Schools and workplaces find it difficult if not impossible to cope with
that kind of thing.
nickie

So would I like to know if an answer is around. I'm coming up to
sixty & I still haven't got it under control.

You might like to check for Temporal Lobe Epilepsy. Does not cause
fits, just an apparent sleep. Also screws up sleep patterns. TLE, I
read somewhere, is of much higher incidence in Autistics.
AS! ds++:+++ a++ c+++ p++ t+ f-- S+ p+ e++ h++ r++ n++ i+ P+ m++ M

[unknown]

Post by Canth

Post by nickie{D}

Post by tebald
My son (13) has been on 5 diff sleep meds and I still can't get him to
sleep.
His first 11 yrs he didn't sleep at all and I blamed myself because I
didn't know young children could have sleep problems like adults can.
He was dx'd with AS at 11.
When I realized Aspergers I tried Melantonin. Wonderful! He slept I
slept.
Now two years later he is not sleeping. We have tried clonidine,
ativan, hydroxine (2 diff doses) benydryl (2 diff doses) and
clonzapem.
Some of these heavy duty stuff doesn't affect my child. He can stay
up for 48 hours at a time.
He cycles. He will get his days and nights mixed up.
I just want a normal cycle that can help him go to school.
BTW we hired an atty and won a settlement.
Any ideas?
Lainie

I'd be really interested if anyone has cracked this one. My 28 year old
son is still hamstrung by sleep irregularity. He seems to have a cycle
of about 25 or 26 hours and there are regular times when he is up nights
instead of days. He tends to do a "reset" by having an extra long day
and/or an extra long sleep every so often but I despair of his ever
being able to keep regular commitments.
At school he used to cope most of the time, but he had difficulty
getting to sleep at night. I think he just read quiety in bed as he
wasn't disruptive of my sleep then. He wasn't diagnosed until he was 21
after he'd been away to university and failed to cope there. And still
it was two years after he came home before anyone thought to have him
assessed. He has an Aspergers diagnosis.
I tend to the view that letting him regulate his own sleep is best for
him physically, but of course it's so disruptive of his life.
Schools and workplaces find it difficult if not impossible to cope with
that kind of thing.
nickie

So would I like to know if an answer is around. I'm coming up to
sixty & I still haven't got it under control.
You might like to check for Temporal Lobe Epilepsy. Does not cause
fits, just an apparent sleep. Also screws up sleep patterns. TLE, I
read somewhere, is of much higher incidence in Autistics.
AS! ds++:+++ a++ c+++ p++ t+ f-- S+ p+ e++ h++ r++ n++ i+ P+ m++ M

This seems to be extremely common on the autism spectrum.
It affects both me and my son (11).
I wonder if we should add a measure for it to the AS code?
It may help to get some idea of the prevalence.
Any suggestions on what letter we could use?
S is used in both upper and lower case, and i (insomnia) in lower case
- maybe upper case I?
Who's running the decoder these days?

[No Body]

Post by nickie{D}

Post by tebald
My son (13) has been on 5 diff sleep meds and I still can't get him to
sleep.
His first 11 yrs he didn't sleep at all and I blamed myself because I
didn't know young children could have sleep problems like adults can.
He was dx'd with AS at 11.
When I realized Aspergers I tried Melantonin. Wonderful! He slept I
slept.
Now two years later he is not sleeping. We have tried clonidine,
ativan, hydroxine (2 diff doses) benydryl (2 diff doses) and
clonzapem.
Some of these heavy duty stuff doesn't affect my child. He can stay
up for 48 hours at a time.
He cycles. He will get his days and nights mixed up.
I just want a normal cycle that can help him go to school.
BTW we hired an atty and won a settlement.
Any ideas?
Lainie

I'd be really interested if anyone has cracked this one. My 28 year
old son is still hamstrung by sleep irregularity. He seems to have
a cycle of about 25 or 26 hours and there are regular times when he
is up nights instead of days. He tends to do a "reset" by having an
extra long day and/or an extra long sleep every so often but I
despair of his ever being able to keep regular commitments.
At school he used to cope most of the time, but he had difficulty
getting to sleep at night. I think he just read quiety in bed as he
wasn't disruptive of my sleep then. He wasn't diagnosed until he
was 21 after he'd been away to university and failed to cope there.
And still it was two years after he came home before anyone thought
to have him assessed. He has an Aspergers diagnosis.
I tend to the view that letting him regulate his own sleep is best
for him physically, but of course it's so disruptive of his life.
Schools and workplaces find it difficult if not impossible to cope
with that kind of thing.
nickie

It is always possible to homeschool the child. And I have had
tremendous success with 1000mg of l-tryptophan for sleep. Of course, I
was also taking benadryl, trazadone, and valium too.

[Ray]

Post by nickie{D}
I'd be really interested if anyone has cracked this one. My 28 year old
son is still hamstrung by sleep irregularity. He seems to have a cycle
of about 25 or 26 hours and there are regular times when he is up nights
instead of days. He tends to do a "reset" by having an extra long day
and/or an extra long sleep every so often but I despair of his ever
being able to keep regular commitments.

Humans have a normal sleep cycle of 25 to 26 hours. Most will reset
with the sun cycle. If you put a person in a dark room their normal
day is 25 to 26 hours. I knew an engineer who could not reset and his
"day" started an hour later every day. He worked for a major company
and he was a good engineer so his routine was tolerated.

I am AS and have REM Sleep Behavior Disorder. I do not cycle. I have
tried all the mentioned drugs with no effect. Sometimes the cure is
worse than the disease so I have learned to live with it.

Post by nickie{D}
At school he used to cope most of the time, but he had difficulty
getting to sleep at night. I think he just read quiety in bed as he
wasn't disruptive of my sleep then. He wasn't diagnosed until he was 21
after he'd been away to university and failed to cope there. And still
it was two years after he came home before anyone thought to have him
assessed. He has an Aspergers diagnosis.
I tend to the view that letting him regulate his own sleep is best for
him physically, but of course it's so disruptive of his life.
Schools and workplaces find it difficult if not impossible to cope with
that kind of thing.
nickie

[No Body]

Post by tebald
My son (13) has been on 5 diff sleep meds and I still can't get him to
sleep.
His first 11 yrs he didn't sleep at all and I blamed myself because I
didn't know young children could have sleep problems like adults can.
He was dx'd with AS at 11.
When I realized Aspergers I tried Melantonin. Wonderful! He slept I
slept.
Now two years later he is not sleeping. We have tried clonidine,
ativan, hydroxine (2 diff doses) benydryl (2 diff doses) and
clonzapem.
Some of these heavy duty stuff doesn't affect my child. He can stay
up for 48 hours at a time.
He cycles. He will get his days and nights mixed up.
I just want a normal cycle that can help him go to school.
BTW we hired an atty and won a settlement.
Any ideas?
Lainie

By hiring an attorney and winning a settlement the only logical
conclusion is that you suffered a loss by someone's negligence or
intent. What could that possibly have to do with autism?

[Terry Jones]

Post by No Body

Post by tebald
BTW we hired an atty and won a settlement.

By hiring an attorney and winning a settlement the only logical
conclusion is that you suffered a loss by someone's negligence or
intent. What could that possibly have to do with autism?

Could be a person / organisation failing to meet their statutory
obligations - That seems to be quite a common experience for autistics
/ the parents of same.

[No Body]

Post by Terry Jones

Post by No Body

Post by tebald
BTW we hired an atty and won a settlement.

By hiring an attorney and winning a settlement the only logical
conclusion is that you suffered a loss by someone's negligence or
intent. What could that possibly have to do with autism?

Could be a person / organisation failing to meet their statutory
obligations - That seems to be quite a common experience for
autistics
/ the parents of same.
--
Terry

Ooooh, more of "the world is not the way I want it so I'll sue."
Whatever floats your boat. OTOH, I is a litigiphobe.

[tebald]

Post by Terry Jones

Post by tebald
BTW we hired an atty and won a settlement.

   By hiring an attorney and winning a settlement the only logical
conclusion is that you suffered a loss by someone's negligence or
intent. What could that possibly have to do with autism?

Could be a person / organisation failing to meet their statutory
obligations - That seems to be quite a common experience for
autistics
/ the parents of same.
--
Terry

    Ooooh, more of "the world is not the way I want it so I'll sue."
Whatever floats your boat. OTOH, I is a litigiphobe.- Hide quoted text -
- Show quoted text -

On the settlement, I hit the button too soon. The suit was armed at
the school because they were denying my child a FAPE. No IEP to help
give him support in the school that he needed. That really doesn't
have much to do with Autism, but in my case it does.

I'm just frustrated when they still think I am a lazy parent who isn't
"Making" my child sleep and he misses school.

I was hoping someone could give me some suggestions on how to help my
son with the sleep issue.

[Bob Badour]

Post by tebald

Post by No Body

Post by Terry Jones

Post by No Body

Post by tebald
BTW we hired an atty and won a settlement.

By hiring an attorney and winning a settlement the only logical
conclusion is that you suffered a loss by someone's negligence or
intent. What could that possibly have to do with autism?

Could be a person / organisation failing to meet their statutory
obligations - That seems to be quite a common experience for
autistics
/ the parents of same.
--
Terry

Ooooh, more of "the world is not the way I want it so I'll sue."
Whatever floats your boat. OTOH, I is a litigiphobe.

On the settlement, I hit the button too soon. The suit was armed at
the school because they were denying my child a FAPE. No IEP to help
give him support in the school that he needed. That really doesn't
have much to do with Autism, but in my case it does.
I'm just frustrated when they still think I am a lazy parent who isn't
"Making" my child sleep and he misses school.
I was hoping someone could give me some suggestions on how to help my
son with the sleep issue.

Like many here, I never really seemed to get my sleep completely under
control either. My sleep, though, was never as disturbed as your child's.

[No Body]

Post by Bob Badour
Like many here, I never really seemed to get my sleep completely
under control either. My sleep, though, was never as disturbed as
your child's.

I am a confirmed nightowl. I can stay up all night, becoming more
active and energetic by the minute. I am also extremely good at being
silent so as not to disturb anyone nearby. However, as soon as there
is any sign of the sun, I get very very sleepy. All of my sleep
problems now are related to being married to a NT woman who won't go
for that.
Is there any sign of any pattern or even a trace of a pattern in
his sleep? Or is it just flat out refusal to become unconscious,
period?
If you do medicate him to sleep, keep his door locked from the
outside so he doesn't walk about in a fog and injure himself. There is
a lot of activity while sleeping that runs in my family.

[tebald]

Post by Bob Badour
Like many here, I never really seemed to get my sleep completely
under control either. My sleep, though, was never as disturbed as
your child's.

    I am a confirmed nightowl. I can stay up all night, becoming more
active and energetic by the minute. I am also extremely good at being
silent so as not to disturb anyone  nearby. However, as soon as there
is any sign of the sun, I get very very sleepy. All of my sleep
problems now are related to being married to a NT woman who won't go
for that.
    Is there any sign of any pattern or even a trace of a pattern in
his sleep? Or is it just flat out refusal to become unconscious,
period?
    If you do medicate him to sleep, keep his door locked from the
outside so he doesn't walk about in a fog and injure himself. There is
a lot of activity while sleeping that runs in my family.

I believe he gets more active at night like you. I also see a
defiance to sleep (the heavy duty meds arn't working and he can push
thru them). If he's on the computer he just goes nuts. I try to get
him off it and sometimes can get him to lay down on his bed or couch
downstairs to watch tv quietly.... (he switches places to sleep on a
cycle) but since I spent 11 years without sleep I just let him fall
where he falls.

The sleep meds don't normally change his behavior. He normally likes
to lock his door (which we allow, because we know he needs his own
space) but can open it with an emergency broken q-tip if needed. He
likes the respect. We always knock before we use the q-tip and thats
only when he hasn't answered (like he is actually asleep)

But he mainly likes to sleep downstairs (part of that is because it
gets very hot right now during the summer and it's cooler downstairs.
He is very sensitive to heat.

I'm sorry your NT wife didn't understand. Trust me, I would.

[No Body]

Post by No Body

On Sat, 4 Jul 2009 11:02:03 -0500, "No Body"

Post by No Body

Post by tebald
BTW we hired an atty and won a settlement.

By hiring an attorney and winning a settlement the only logical
conclusion is that you suffered a loss by someone's negligence or
intent. What could that possibly have to do with autism?

Could be a person / organisation failing to meet their statutory
obligations - That seems to be quite a common experience for
autistics
/ the parents of same.
--
Terry

Ooooh, more of "the world is not the way I want it so I'll sue."
Whatever floats your boat. OTOH, I is a litigiphobe.- Hide quoted text -
- Show quoted text -

On the settlement, I hit the button too soon. The suit was armed at
the school because they were denying my child a FAPE. No IEP to help
give him support in the school that he needed. That really doesn't
have much to do with Autism, but in my case it does.

I'm just frustrated when they still think I am a lazy parent who isn't
"Making" my child sleep and he misses school.

I was hoping someone could give me some suggestions on how to help my
son with the sleep issue.



I'm sorry I didn't grasp your situation. I have no idea what the
acronyms stand for, but if the child won't/can't sleep, there are
drugs that will do it. It may terrify you to give them to your child,
but a competent doctor can do it. Perhaps you haven't found one yet.
Is your child in public school? I hope not...

[tebald]

Post by No Body

On Sat, 4 Jul 2009 11:02:03 -0500, "No Body"

Post by No Body

Post by tebald
BTW we hired an atty and won a settlement.

By hiring an attorney and winning a settlement the only logical
conclusion is that you suffered a loss by someone's negligence or
intent. What could that possibly have to do with autism?

Could be a person / organisation failing to meet their statutory
obligations - That seems to be quite a common experience for autistics
/ the parents of same.
--
Terry

Ooooh, more of "the world is not the way I want it so I'll sue."
Whatever floats your boat. OTOH, I is a litigiphobe.- Hide quoted text -
- Show quoted text -

On the settlement, I hit the button too soon.  The suit was armed at
the school because they were denying my child a FAPE.  No IEP to help
give him support in the school that he needed.  That really doesn't
have much to do with Autism, but in my case it does.
I'm just frustrated when they still think I am a lazy parent who isn't
"Making" my child sleep and he misses school.
I was hoping someone could give me some suggestions on how to help my
son with the sleep issue.
    I'm sorry I didn't grasp your situation. I have no idea what the
acronyms stand for, but if the child won't/can't sleep, there are
drugs that will do it. It may terrify you to give them to your child,
but a competent doctor can do it. Perhaps you haven't found one yet.
Is your child in public school? I hope not...- Hide quoted text -
- Show quoted text -

Oh no problem with the mistake..... I realized when I hit the button I
wasn't very clear about the law suit. I should of made it more clear
or concrete :) But I was tired and went to bed.

They have both been home for the last year but I do know they do so
much better in school as it's more structured. I am not very
structured and due to Learning disabilitys of my own, that were never
found I am not the best teacher around.

BUT I have been the advocate that they need and will fight to the end
to make sure they are treated right. Dont you worry about me. I
fight and fight well.

[Terry Jones]

Post by No Body
Ooooh, more of "the world is not the way I want it so I'll sue."
Whatever floats your boat. OTOH, I is a litigiphobe.

No, a question of not providing what it "says on the label", taking
the money but not doing the job. In essence a form of fraud.

Litigation is far from ideal (expensive, complex, and unreliable), but
it seems to be one of the few tools available.

What practical solution do you have to getting individuals and
organisations to simply do the job they're paid to do?

[No Body]

Post by Terry Jones

Post by No Body
Ooooh, more of "the world is not the way I want it so I'll sue."
Whatever floats your boat. OTOH, I is a litigiphobe.

No, a question of not providing what it "says on the label", taking
the money but not doing the job. In essence a form of fraud.
Litigation is far from ideal (expensive, complex, and unreliable), but
it seems to be one of the few tools available.
What practical solution do you have to getting individuals and
organisations to simply do the job they're paid to do?
--
Terry

In America, we call the reporters on the evening news and they
will come out with cameras and do a story. But it has to be obvious in
the first 10 seconds that it is a story and not too complex for people
to understand. What is a FAPE? Or IEP? Improvised Exploding Penguin?

[Terry Jones]

Post by No Body
In America, we call the reporters on the evening news and they
will come out with cameras and do a story. But it has to be obvious in
the first 10 seconds that it is a story and not too complex for people
to understand.

But things to do with autism often aren't simple, and the simple
beliefs about it are often wrong.

I don't know how it works in the US, but over here when that sort of
thing appears in the media (and *stays* there for long enough),
there's plenty of promises, but translating these into actions tend to
be "slow and show".

(Or if it's really embarrassing for the authorities, rushed and poorly
thought out).

[tebald]

Post by Terry Jones

Post by No Body
In America, we call the reporters on the evening news and they
will come out with cameras and do a story. But it has to be obvious in
the first 10 seconds that it is a story and not too complex for people
to understand.

But things to do with autism often aren't simple, and the simple
beliefs about it are often wrong.
I don't know how it works in the US, but over here when that sort of
thing appears in the media (and *stays* there for long enough),
there's plenty of promises, but translating these into actions tend to
be "slow and show".
(Or if it's really embarrassing for the authorities, rushed and poorly
thought out).
--
Terry

Ya I have thought about contacting the media, but then I don't want to
"out" my kids without there permission. They would be totally
overwhelmed and would not like it.

I'm still trying to get them to be okay with this thing. I want them
to stand up and be proud for who they are, but it's hard at there
age. They just don't get it. They don't get why it's not okay to call
someone FAT or OLD when they first meet them.

I just want them to be happy in there own skin.... the way they are.
I love them!

[toto]

Post by No Body
What is a FAPE? Or IEP? Improvised Exploding Penguin?

FAPE = free and appropriate public education

http://www.ed.gov/about/offices/list/ocr/docs/edlite-FAPE504.html

IEP = individualized education program

http://www.wrightslaw.com/info/iep.index.htm

[tebald]

Post by Terry Jones

Post by No Body
Ooooh, more of "the world is not the way I want it so I'll sue."
Whatever floats your boat. OTOH, I is a litigiphobe.

No, a question of not providing what it "says on the label", taking
the money but not doing the job. In essence a form of fraud.
Litigation is far from ideal (expensive, complex, and unreliable), but
it seems to be one of the few tools available.
What practical solution do you have to getting individuals and
organisations to simply do the job they're paid to do?
--
Terry

Thank you Terry, perfect way of putting it. Yes a form of fraud. And
my god if you only knew what it was like to file for Due process on a
school district.

This was something I so avoided until we just couldn't help anymore.
My children were having rages at home due to the anxiety at school.

[Terry Jones]

Post by tebald
My son (13) has been on 5 diff sleep meds and I still can't get him to
sleep.
His first 11 yrs he didn't sleep at all and I blamed myself because I
didn't know young children could have sleep problems like adults can.
He was dx'd with AS at 11.
When I realized Aspergers I tried Melantonin. Wonderful! He slept I
slept.
Now two years later he is not sleeping. We have tried clonidine,
ativan, hydroxine (2 diff doses) benydryl (2 diff doses) and
clonzapem.
Some of these heavy duty stuff doesn't affect my child. He can stay
up for 48 hours at a time.
He cycles. He will get his days and nights mixed up.
I just want a normal cycle that can help him go to school.

Like several of the other posters I've had sleep problems since I was
a child - Regular meds haven't helped in the longer term. Melatonin
helped somewhat, and for a while, but seems to need periods without in
order to regain it's effectiveness.

One thing which is supposed to help with normalising sleep cycles is
using a light box in the morning (although I've never tried this
myself). But IIRC this works via influencing the production of things
like melatonin - so depending on where in the "chain" the problem
lies, it may not work (though I'm just guessing here).

Maybe you could get a loaned or rented unit for a month or two to try
it out (as I was able to do for my TENS device)?

[Bob Badour]

Post by Terry Jones

Post by tebald
My son (13) has been on 5 diff sleep meds and I still can't get him to
sleep.
His first 11 yrs he didn't sleep at all and I blamed myself because I
didn't know young children could have sleep problems like adults can.
He was dx'd with AS at 11.
When I realized Aspergers I tried Melantonin. Wonderful! He slept I
slept.
Now two years later he is not sleeping. We have tried clonidine,
ativan, hydroxine (2 diff doses) benydryl (2 diff doses) and
clonzapem.
Some of these heavy duty stuff doesn't affect my child. He can stay
up for 48 hours at a time.
He cycles. He will get his days and nights mixed up.
I just want a normal cycle that can help him go to school.

Like several of the other posters I've had sleep problems since I was
a child - Regular meds haven't helped in the longer term. Melatonin
helped somewhat, and for a while, but seems to need periods without in
order to regain it's effectiveness.
One thing which is supposed to help with normalising sleep cycles is
using a light box in the morning (although I've never tried this
myself). But IIRC this works via influencing the production of things
like melatonin - so depending on where in the "chain" the problem
lies, it may not work (though I'm just guessing here).
Maybe you could get a loaned or rented unit for a month or two to try
it out (as I was able to do for my TENS device)?

I find a light box works better for me in the evening. During the long
days of summer, I don't need one at all, but my sleep still gets
irregular. I just get better sleep.

[Aquarian Monkey]

Post by Bob Badour

Post by Terry Jones

Post by tebald
My son (13) has been on 5 diff sleep meds and I still can't get him to
sleep.
His first 11 yrs he didn't sleep at all and I blamed myself because I
didn't know young children could have sleep problems like adults can.
He was dx'd with AS at 11.
When I realized Aspergers I tried Melantonin. Wonderful! He slept I
slept.
Now two years later he is not sleeping. We have tried clonidine,
ativan, hydroxine (2 diff doses) benydryl (2 diff doses) and
clonzapem.
Some of these heavy duty stuff doesn't affect my child. He can stay
up for 48 hours at a time.
He cycles. He will get his days and nights mixed up.
I just want a normal cycle that can help him go to school.

Like several of the other posters I've had sleep problems since I was
a child - Regular meds haven't helped in the longer term. Melatonin
helped somewhat, and for a while, but seems to need periods without in
order to regain it's effectiveness.
One thing which is supposed to help with normalising sleep cycles is
using a light box in the morning (although I've never tried this
myself). But IIRC this works via influencing the production of things
like melatonin - so depending on where in the "chain" the problem
lies, it may not work (though I'm just guessing here).
Maybe you could get a loaned or rented unit for a month or two to try
it out (as I was able to do for my TENS device)?

I find a light box works better for me in the evening. During the long
days of summer, I don't need one at all, but my sleep still gets
irregular. I just get better sleep.

Interesting...both of my kids sleep like lambs <knock on wood>, but I
have had insomnia nearly my whole life. I use ambien when it gets too
bad, because there comes a point where if I don't sleep I get a little
hypomanic and I don't really like everything about how that feels. I
didn't realize it was so common in people on the spectrum.

[tebald]

Post by Aquarian Monkey

Post by Bob Badour

Post by Terry Jones

Post by tebald
My son (13) has been on 5 diff sleep meds and I still can't get him to
sleep.
His first 11 yrs he didn't sleep at all and I blamed myself because I
didn't know young children could have sleep problems like adults can.
He was dx'd with AS at 11.
When I realized Aspergers I tried Melantonin.  Wonderful!  He slept I
slept.
Now two years later he is not sleeping.  We have tried clonidine,
ativan, hydroxine (2 diff doses) benydryl (2 diff doses) and
clonzapem.
Some of these heavy duty stuff doesn't affect my child.  He can stay
up for 48 hours at a time.
He cycles.  He will get his days and nights mixed up.
I just want a normal cycle that can help him go to school.

Like several of the other posters I've had sleep problems since I was
a child - Regular meds haven't helped in the longer term. Melatonin
helped somewhat, and for a while, but seems to need periods without in
order to regain it's effectiveness.
One thing which is supposed to help with normalising sleep cycles is
using a light box in the morning (although I've never tried this
myself). But IIRC this works via influencing the production of things
like melatonin - so depending on where in the "chain" the problem
lies, it may not work (though I'm just guessing here).
Maybe you could get a loaned or rented unit for a month or two to try
it out (as I was able to do for my TENS device)?

I find a light box works better for me in the evening. During the long
days of summer, I don't need one at all, but my sleep still gets
irregular. I just get better sleep.

Interesting...both of my kids sleep like lambs <knock on wood>, but I
have had insomnia nearly my whole life. I use ambien when it gets too
bad, because there comes a point where if I don't sleep I get a little
hypomanic and I don't really like everything about how that feels. I
didn't realize it was so common in people on the spectrum.- Hide quoted text -
- Show quoted text -

I have sleep problems too and take Lunesta. It's wonderful!!! But if
I don't get the right amount of sleep (I have always needed between
8-10 hours of sleep) I get a sleep hangover lol.

I asked my son's Neuro if we could try this but he said they haven';t
done studies on children yet. So no go hear.

[astri]

Post by Bob Badour
I find a light box works better for me in the evening. During the
long days of summer, I don't need one at all, but my sleep still gets
irregular. I just get better sleep.

apparently, the time you should use the light box depends on when you
have difficulty sleeping (e.g., late asleep vs. early awake).

-- astri

======================
to email send to astri
======================
at volcano dot org
======================

[tebald]

Post by Terry Jones

Post by tebald
My son (13) has been on 5 diff sleep meds and I still can't get him to
sleep.
His first 11 yrs he didn't sleep at all and I blamed myself because I
didn't know young children could have sleep problems like adults can.
He was dx'd with AS at 11.
When I realized Aspergers I tried Melantonin.  Wonderful!  He slept I
slept.
Now two years later he is not sleeping.  We have tried clonidine,
ativan, hydroxine (2 diff doses) benydryl (2 diff doses) and
clonzapem.
Some of these heavy duty stuff doesn't affect my child.  He can stay
up for 48 hours at a time.
He cycles.  He will get his days and nights mixed up.
I just want a normal cycle that can help him go to school.

Like several of the other posters I've had sleep problems since I was
a child - Regular meds haven't helped in the longer term. Melatonin
helped somewhat, and for a while, but seems to need periods without in
order to regain it's effectiveness.
One thing which is supposed to help with normalising sleep cycles is
using a light box in the morning (although I've never tried this
myself). But IIRC this works via influencing the production of things
like melatonin - so depending on where in the "chain" the problem
lies, it may not work (though I'm just guessing here).
Maybe you could get a loaned or rented unit for a month or two to try
it out (as I was able to do for my TENS device)?
--
Terry- Hide quoted text -
- Show quoted text -

melatonin was the BOMB!!! But after two years it faded and more sleep
problems came out like a previous poster.

I have heard a little bit about this light. Maybe I can look into it.

Thanks :)

[Terry Jones]

Post by tebald
melatonin was the BOMB!!! But after two years it faded and more sleep
problems came out like a previous poster.

What I was advised by the prescriber was that you needed to leave
"gaps" to maintain its' effectiveness - Take it for a week or two,
then have a few days without.

Because it was helping, I tended to take it for too long / resume too
quickly, so that it lost effectiveness for me too.

[Robert Miles]

Post by tebald
My son (13) has been on 5 diff sleep meds and I still can't get him to
sleep.
His first 11 yrs he didn't sleep at all and I blamed myself because I
didn't know young children could have sleep problems like adults can.
He was dx'd with AS at 11.
When I realized Aspergers I tried Melantonin. Wonderful! He slept I
slept.
Now two years later he is not sleeping. We have tried clonidine,
ativan, hydroxine (2 diff doses) benydryl (2 diff doses) and
clonzapem.
Some of these heavy duty stuff doesn't affect my child. He can stay
up for 48 hours at a time.
He cycles. He will get his days and nights mixed up.
I just want a normal cycle that can help him go to school.
BTW we hired an atty and won a settlement.
Any ideas?
Lainie

.
I've had problems sleeping very much lately, but they didn't start
until I retired and could therefore not try as hard to follow the
usual schedule. I've found a few things that help a little, but not
enough:

1. Adding walnuts to my diet.

2. Cutting down the noise from the air conditioner outside my
window.

3. Cutting down the rest of the noise in the building, except
fot the noise from relatively gentle rain.

4. Cooling down my room.

Robert Miles

[Robert Miles]

Post by tebald
My son (13) has been on 5 diff sleep meds and I still can't get him to
sleep.
His first 11 yrs he didn't sleep at all and I blamed myself because I
didn't know young children could have sleep problems like adults can.
He was dx'd with AS at 11.
When I realized Aspergers I tried Melantonin. Wonderful! He slept I
slept.
Now two years later he is not sleeping. We have tried clonidine,
ativan, hydroxine (2 diff doses) benydryl (2 diff doses) and
clonzapem.
Some of these heavy duty stuff doesn't affect my child. He can stay
up for 48 hours at a time.
He cycles. He will get his days and nights mixed up.
I just want a normal cycle that can help him go to school.
BTW we hired an atty and won a settlement.
Any ideas?
Lainie

Since you posted that, I've found a few articles on something that MIGHT
help.

Humans tend to synchronize the time they tend to stay awake to the blue
light
in much of the sky during the day. Therefore, you might try making the
colors
of light in your home bluer during the day and less blue at night

Fluorescent bulbs tend to come in two different versions of white - daylight
or cool white for the bluer shade, and warm white for the redder shade.
Therefore, they may help.

Or, if you can't afford that, just try to persuade him to stay outside
on days
that aren't very cloudy.

Robert

[Autindividual]

Can it be determined Why this person is so far off the circadian pattern?
Is he hypersensitive? I am and it often literally distracts me from that
pattern. But I pay for it the next as I'm struggling to stay awake.

The greatly enhanced stimulation of hypersensitivity can easily prevent
getting to sleep.

[p***@gmail.com]

Post by tebald
My son (13) has been on 5 diff sleep meds and I still can't get him to
sleep.
His first 11 yrs he didn't sleep at all and I blamed myself because I
didn't know young children could have sleep problems like adults can.
He was dx'd with AS at 11.
When I realized Aspergers I tried Melantonin. Wonderful! He slept I
slept.
Now two years later he is not sleeping. We have tried clonidine,
ativan, hydroxine (2 diff doses) benydryl (2 diff doses) and
clonzapem.
Some of these heavy duty stuff doesn't affect my child. He can stay
up for 48 hours at a time.
He cycles. He will get his days and nights mixed up.
I just want a normal cycle that can help him go to school.
BTW we hired an atty and won a settlement.
Any ideas?
Lainie

My 24 year old Aspergers son has struggled with his sleep cycle. He is using a bright light therapy lamp in the mornings before work. He says it makes him more alert in the mornings (not a morning person at all) and he does fall asleep more easily at night. They are not terribly expensive. I bought one on ebay (new, but open box return) for $45.99.

[Buzzard]

Post by p***@gmail.com
snipo
My 24 year old Aspergers son has struggled with his sleep cycle. He is using a bright light therapy lamp in the mornings before work. He says it makes him more alert in the mornings (not a morning person at all) and he does fall asleep more easily at night. They are not terribly expensive. I bought one on ebay (new, but open box return) for $45.99.

Has anyone tried different color lights?
I've heard that red light doesn't trigger the circadian
light-sensing thing in your brain the way blue light does
red light in evening maybe? blue in the morning?
i dknont kno

[Phil W Lee]

Post by Buzzard

Post by p***@gmail.com
snipo
My 24 year old Aspergers son has struggled with his sleep cycle. He is using a bright light therapy lamp in the mornings before work. He says it makes him more alert in the mornings (not a morning person at all) and he does fall asleep more easily at night. They are not terribly expensive. I bought one on ebay (new, but open box return) for $45.99.

Has anyone tried different color lights?
I've heard that red light doesn't trigger the circadian
light-sensing thing in your brain the way blue light does
red light in evening maybe? blue in the morning?
i dknont kno

I vaguely recall that the red lights used below decks at night in
warships (to reduce the extent of night vision loss for those going on
watch) have the effect of being somewhat soporific.

I can't remember where I came across that, although it's well worth a
bit of experimentation.

[FBMboomer]

Post by Phil W Lee

Post by Buzzard

Post by p***@gmail.com
snipo
My 24 year old Aspergers son has struggled with his sleep cycle. He is using a bright light therapy lamp in the mornings before work. He says it makes him more alert in the mornings (not a morning person at all) and he does fall asleep more easily at night. They are not terribly expensive. I bought one on ebay (new, but open box return) for $45.99.

Has anyone tried different color lights?
I've heard that red light doesn't trigger the circadian
light-sensing thing in your brain the way blue light does
red light in evening maybe? blue in the morning?
i dknont kno

I vaguely recall that the red lights used below decks at night in
warships (to reduce the extent of night vision loss for those going on
watch) have the effect of being somewhat soporific.
I can't remember where I came across that, although it's well worth a
bit of experimentation.

Yes, I remember the lights in the con were always red at night when
running on the surface. You brought back old memories.