sleep

January 16, 2008

Yes, shouting doesn't work here either, however, I did find that watching QVC would often make him fall asleep.

Sara, Tixylix Cough and Cold also works for (he's out for a good 11 hours on it) and it doesn't have paracetamol in it like the Medised does.

Happy Sleeping,

Darla xx

Desperation eh? I can't remember. Still took about two hours (instead of four or five). Think rubber mallet. I tried shouting too.xx SallySass and Rem wrote:>> Thanks Sally,>> I used to give Edith cough mixture which must (then) have some sort of> knock-out in it and sent her back to sleep more quickly than otherwise.>> What was it?>> SARA>> > ---------------------------------------------------------->> No virus found in this incoming message.> Checked by AVG Free Edition. > Version: 7.5.516 / Virus Database: 269.19.4/1227 - Release Date: 16/01/2008 01:40>

January 16, 2008

I used to give Edith cough mixture which must (then) have some sort of

knock-out in it and sent her back to sleep more quickly than otherwise.

Beware -- it also gav e her black in her teeth because of course I

didn't clean them after giving it and she must have lain with it pooled

in her mouth.

Otherwise total darkness, quiet. I used to lie in the same room, on a

separate bed, stuffed in ear plugs and tried to sleep through it

xx Sally

rexel45@... wrote:

>

> Sara,

> I do so feel for you as god knows I've been there. I used to watch

> that damnable Dance with the Teletubbies 4 or 5 times in a night. To

> say that is was hellish would be an understatement. I always remind

> myself that sleep deprivation is a form of torture so I am allowed to

> find it rather difficult. Right now is sleeping through the night

> and I feel as though I've had a brain transplant, everything seems so

> much more manageable - chronic sleep deprivation so very very much

> affects the way I see the whole entire world.

>

> Look, I have to admit that once gets stuck into a cycle of not

> sleeping for a few nights in a row I give him the maximum dose of

> Medised. That knocks him out for one night and seems to break the

> adrenalin cycle and he often can sleep the next night. (Please no

> emails telling me how bad medised is, it IS not a healthy thing to do

> and I know that.) It's not the best solution but when you've tried

> all biomed stuff (and you have!) and he's still not sleeping night

> after night at least you might get to sleep for one night. It's worth

> a try - but be warned, obviously some kids have that awful reaction in

> which it makes them hyper!

>

> Maybe someone else will have better advice...I have to admit my advice

> is not good advice but it works.

>

> Thinking of you,

> Darla xx

>

> In a message dated 16/01/2008 09:13:38 GMT Standard Time,

> Moroza-@... writes:

>

> Those of you that have children that donâ€™t sleep well. What do you

> do with them? or what do they do when theyâ€™re supposed to be

> asleep? When Tom wakes in the small hours for the rest of the

> night we just watch video after video throughout the next day too

> sometimes if no therapist is coming and Iâ€™m too tired to move.

> When he wonâ€™t go to sleep at night I just keep going up every 5 or

> 10 mins to tell him to sleep. Itâ€™s no joke doing this for 4 hours

> on the trot. Iâ€™m not happy with either of these. Anyone got any

> suggestions? SARA

>

> ------------------------------------------------------------------------

>

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.5.516 / Virus Database: 269.19.4/1227 - Release Date: 16/01/2008

01:40

>

January 16, 2008

Hi sophie didn't sleep through at all until after we went to see a cranial osteopath I know it might be a long shot but it might be worth looking into? we couldn't believe that some touching of her head could make a difference but it did!!!I am sure you have tried all the biomed things around sleep so I can't think of any other things but I do hope that cranial might help you and Tom. I'll cross my fingers I really symmpathise lack of sleep is just bloody! emma x

January 16, 2008

Hi ,

Just ideas - this is what helped for us.

No soya, Houston enzymes and mag sulphate bath got Eddie sleeping.

Also dark quiet room and he slept in our bed.

When he never slept we coped by taking turns in the night so we each

had 3.5hrs.

Best wishes,

Sandy

January 16, 2008

Thanks

so much for that Emma. Unfortunately, we took Tom to a cranial osteopath who

said he was probably in dire need of treatment as the muscles on his head were

unbelievably tense but Tom wouldn’t let him near his head and so he

couldn’t do a proper assessment or any treatment. He even said he would come and treat him in

his sleep but I made 2 appointments at 9

pm and had to cancel both of them as Tom was wide awake!!! You have reminded me to look into it again

though. Thanks, SARA

-----Original

Message-----

From: Autism-Biomedical-Europe

[mailto:Autism-Biomedical-Europe ] On Behalf Of E BRANDT

Sent: 16 January 2008 11:37

To:

Autism-Biomedical-Europe

Subject:

Re:sleep

Hi

sophie didn't sleep

through at all until after we went to see a cranial osteopath I know it might

be a long shot but it might be worth looking into? we couldn't believe that

some touching of her head could make a difference but it did!!!I am sure you

have tried all the biomed things around sleep so I can't think of any other

things but I do hope that cranial might help you and Tom. I'll cross my fingers

I really symmpathise lack of sleep is just bloody!

emma x

January 16, 2008

Thanks

Sandy.

Tom

has no soya, and has Houston enzymes and mag suphate bath already. The dark

quiet room is impossible because Tom just comes out!!! I can’t lock him

in even if I wanted to as he is likely to poo or wet himself

still. If I lie on his bed, or my bed, he doesn’t! it

is hard to get across how manic he is. I

don’t allow him downstairs and keep sending him back to bed but he

bounces straight back out. Remis works away so there

is no one to take turns with. L thanks

though, SARA

-----Original

Message-----

From: Autism-Biomedical-Europe

[mailto:Autism-Biomedical-Europe ] On Behalf Of Sandy and Tim

Sent: 16 January 2008 11:49

To:

Autism-Biomedical-Europe

Subject:

Re:sleep

Hi ,

Just ideas - this is what helped for us.

No soya, Houston enzymes and mag sulphate bath got Eddie sleeping.

Also dark quiet room and he slept in our bed.

When he never slept we coped by taking turns in the night so we each

had 3.5hrs.

Best wishes,

Sandy

January 16, 2008

-Sara ,sorry if this not much help,just thinking of things to try

and support.Katy used to be like this when small.apart from

everything else going on she would get very restless legs.It would

make her really hyper jumpimg all over the place at bedtime,she

would get like this if she ate strawberries aswell.I'm not sure ,is

this a phenol/sulphation disturbance.May be molybdum or B6 may help.

Sharon.

-- In Autism-Biomedical-Europe , " Sass and Rem "

wrote:

>

> Thanks Sandy.

> Tom has no soya, and has Houston enzymes and mag suphate bath

already.

> The dark quiet room is impossible because Tom just comes out!!! I

can't

> lock him in even if I wanted to as he is likely to poo or wet

himself

> still. If I lie on his bed, or my bed, he doesn't! it is hard to

get

> across how manic he is. I don't allow him downstairs and keep

sending

> him back to bed but he bounces straight back out. Remis works away

so

> there is no one to take turns with. :-( thanks though, SARA

>

> Re:sleep

>

> Hi ,

>

> Just ideas - this is what helped for us.

>

> No soya, Houston enzymes and mag sulphate bath got Eddie sleeping.

> Also dark quiet room and he slept in our bed.

>

> When he never slept we coped by taking turns in the night so we

each

> had 3.5hrs.

> Best wishes,

> Sandy

>

January 16, 2008

Hi Sara

Like Sally, I go into Joes room, take the light bulb out, and either

lie down next to him or lie on a fold out bed next to the door so he

cant get out. If he wakes around midnight-2am he will usually go back

to sleep after a few hours and meanwhile I can doze knowing he cant get

up to too much. If he wakes at 4 or later I know thats it for the night.

We try to keep him in his room, mainly so that the rest of the house

can get some sleep. Videos would be a bad idea for us as they are such

a strong motivator for Joe, it works better if we try and bore him into

going back to sleep.

x

January 16, 2008

Desperation eh? I can't remember. Still took about two hours (instead of

four or five). Think rubber mallet. I tried shouting too.

xx Sally

Sass and Rem wrote:

>

> Thanks Sally,

>

> I used to give Edith cough mixture which must (then) have some sort of

> knock-out in it and sent her back to sleep more quickly than otherwise.

>

> What was it?

>

> SARA

>

> ------------------------------------------------------------------------

>

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.5.516 / Virus Database: 269.19.4/1227 - Release Date: 16/01/2008

01:40

>

January 16, 2008

tixylix it was.

Sally

rexel45@... wrote:

>

> Yes, shouting doesn't work here either, however, I did find that

> watching QVC would often make him fall asleep.

>

> Sara, Tixylix Cough and Cold also works for (he's out for a good

> 11 hours on it) and it doesn't have paracetamol in it like the Medised

> does.

>

> Happy Sleeping,

> Darla xx

>

> In a message dated 16/01/2008 13:13:18 GMT Standard Time,

> bobsallyeva@... writes:

>

> Desperation eh? I can't remember. Still took about two hours

> (instead of

> four or five). Think rubber mallet. I tried shouting too.

> xx Sally

>

> Sass and Rem wrote:

> >

> > Thanks Sally,

> >

> > I used to give Edith cough mixture which must (then) have some

> sort of

> > knock-out in it and sent her back to sleep more quickly than

> otherwise.

> >

> > What was it?

> >

> > SARA

> >

> > ----------------------------------------------------------

> >

> > No virus found in this incoming message.

> > Checked by AVG Free Edition.

> > Version: 7.5.516 / Virus Database: 269.19.4/1227 - Release Date:

> 16/01/2008 01:40

> >

>

> ------------------------------------------------------------------------

>

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.5.516 / Virus Database: 269.19.4/1227 - Release Date: 16/01/2008

01:40

>

January 16, 2008

the first few times we took Tom he was very wary but although we

dont' do it very often when we do he now loves it, finds it very

calming and comes out very alert but calm and focused. also helps

with tummy stuff, not sure how but always results in um " movement "

Stephx

>

> Thanks so much for that Emma. Unfortunately, we took Tom to a

cranial

> osteopath who said he was probably in dire need of treatment as the

> muscles on his head were unbelievably tense but Tom wouldn't let

him

> near his head and so he couldn't do a proper assessment or any

> treatment. He even said he would come and treat him in his sleep

but I

> made 2 appointments at 9 pm and had to cancel both of them as Tom

was

> wide awake!!! You have reminded me to look into it again though.

> Thanks, SARA

>

> Re:sleep

>

> Hi

> sophie didn't sleep through at all until after we went to see a

cranial

> osteopath I know it might be a long shot but it might be worth

looking

> into? we couldn't believe that some touching of her head could

make a

> difference but it did!!!I am sure you have tried all the biomed

things

> around sleep so I can't think of any other things but I do hope

that

> cranial might help you and Tom. I'll cross my fingers I really

> symmpathise lack of sleep is just bloody!

> emma x

>

January 16, 2008

Thanks

Sharon, thanks for that. He’s on both of

those. It may well be a phenol or sulphation problem as both of those are

issues for Tom. I’m sorry everyone – I feel like I’m being

really negative about all your suggestions. But I’m thinking this is an

open forum and, hopefully others with sleep probs are

reading these and somebody somewhere will get advice that will help. Thanks for

all your time and advice, SARA

-----Original

Message-----

From:

Autism-Biomedical-Europe

[mailto:Autism-Biomedical-Europe ] On Behalf Of Sharon

Sent: 16 January 2008 12:26

To:

Autism-Biomedical-Europe

Subject:

Re:sleep

-Sara ,sorry if this not much help,just thinking of things to try

and support.Katy used to be like this when small.apart from

everything else going on she would get very restless legs.It would

make her really hyper jumpimg all over the place at bedtime,she

would get like this if she ate strawberries aswell.I'm not sure ,is

this a phenol/sulphation disturbance.May be molybdum or B6 may help.

Sharon.

-- In Autism-Biomedical-Europe ,

" Sass and Rem "

wrote:

>

> Thanks Sandy.

> Tom has no soya, and has Houston enzymes and mag suphate bath

already.

> The dark quiet room is impossible because Tom just comes out!!! I

can't

> lock him in even if I wanted to as he is likely to poo or wet

himself

> still. If I lie on his bed, or my bed, he doesn't! it is hard to

get

> across how manic he is. I don't allow him downstairs and keep

sending

> him back to bed but he bounces straight back out. Remis works away

so

> there is no one to take turns with. :-( thanks though, SARA

>

> Re:sleep

>

> Hi ,

>

> Just ideas - this is what helped for us.

>

> No soya, Houston enzymes and mag sulphate bath got Eddie sleeping.

> Also dark quiet room and he slept in our bed.

>

> When he never slept we coped by taking turns in the night so we

each

> had 3.5hrs.

> Best wishes,

> Sandy

>

January 16, 2008

Hi Sara

Like Sally, I go into Joes room, take the light bulb out, and either

lie down next to him or lie on a fold out bed next to the door so he

cant get out.

My problem with that is the toilet. Once I put a baby gate in his

doorway. He asked to go to the toilet, I took him and he did need to go. Almost

immediately after he said ‘go to toilet’ again and I said ‘no’.

he then pooed himself, so now I feel I could never shut him in. he is prone to

accidents anyway and often doesn’t ask to go and has diarrhoea and little

warning.

If he wakes around

midnight-2am he will usually go back

to sleep after a few hours and meanwhile I can doze knowing he cant get

up to too much.

I know I sound really negative but believe me I have tried getting him

to go back to sleep as I am absolutely desperate to sleep myself. Tom hares

about, jumps on the bed, shouts out his scripts and regularly headbutts me,

which is NOT a nice way to be woken up. I really am not able to doze or lie

still or even leave him. Once he was in my bed and smashed the glass lamp shade

into smithereens and then jumped into it.

If he wakes at 4 or later I

know thats it for the night.

We try to keep him in his room, mainly so that the rest of the house

can get some sleep. Videos would be a bad idea for us as they are such

a strong motivator for Joe, it works better if we try and bore him into

going back to sleep.

They are only a secondary motivator for Tom (particularly if I’m

careful about what goes on), writing and letters, etc being the first. If I turn

the video off he’ll do his big motivator – when there are no pens

or letters available he can write with clothes or in his own spit!

Thanks though , like I just said in the last message, I appreciate

your time and advice and feel like I’m being really negative but I think

this advice will really help someone.

Thanks, SARA

x

January 16, 2008

Ha

ha – what’s QVC? Thanks Sally and Darla,

think I’ll get a bottle of Tixylix. SARA xxx

-----Original

Message-----

From:

Autism-Biomedical-Europe

[mailto:Autism-Biomedical-Europe ] On Behalf Of rexel45@...

Sent: 16 January 2008 13:27

To:

Autism-Biomedical-Europe

Subject: Re:

sleep

Yes,

shouting doesn't work here either, however, I did find that watching QVC would

often make him fall asleep.

Sara,

Tixylix Cough and Cold also works for (he's out for a good 11 hours on it)

and it doesn't have paracetamol in it like the Medised does.

Happy

Sleeping,

Darla

xx

In a

message dated 16/01/2008 13:13:18 GMT Standard Time, bobsallyevantlworld

writes:

Desperation eh? I can't

remember. Still took about two hours (instead of

four or five). Think rubber mallet. I tried shouting too.

xx Sally

Sass and Rem wrote:

>

> Thanks Sally,

>

> I used to give Edith cough mixture which must (then) have some sort of

> knock-out in it and sent her back to sleep more quickly than otherwise.

>

> What was it?

>

> SARA

>

> ----------------------------------------------------------

>

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.5.516 / Virus Database: 269.19.4/1227 - Release Date: 16/01/2008

01:40

>

January 16, 2008

drugs, that's the solution.

xx Sally

Sass and Rem wrote:

>

> Ha ha – what’s QVC? Thanks Sally and Darla, think I’ll get a bottle of

> Tixylix. SARA xxx

>

> * Re: sleep

>

> Yes, shouting doesn't work here either, however, I did find that

> watching QVC would often make him fall asleep.

>

> Sara, Tixylix Cough and Cold also works for (he's out for a good

> 11 hours on it) and it doesn't have paracetamol in it like the Medised

> does.

>

> Happy Sleeping,

>

> Darla xx

>

> In a message dated 16/01/2008 13:13:18 GMT Standard Time,

> bobsallyeva@... writes:

>

> Desperation eh? I can't remember. Still took about two hours

> (instead of

> four or five). Think rubber mallet. I tried shouting too.

> xx Sally

>

> Sass and Rem wrote:

> >

> > Thanks Sally,

> >

> > I used to give Edith cough mixture which must (then) have some

> sort of

> > knock-out in it and sent her back to sleep more quickly than

> otherwise.

> >

> > What was it?

> >

> > SARA

> >

> > ----------------------------------------------------------

> >

> > No virus found in this incoming message.

> > Checked by AVG Free Edition.

> > Version: 7.5.516 / Virus Database: 269.19.4/1227 - Release Date:

> 16/01/2008 01:40

> >

>

> ------------------------------------------------------------------------

>

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.5.516 / Virus Database: 269.19.4/1227 - Release Date: 16/01/2008

01:40

>

January 16, 2008

-Just had another thought,(Gosh 2 today )Before children when i

worked nights Nytol used to help me sleep,don't know whats in it but

was very calming and kept me asleep.I used to buy it from Boots.

Sharon.

-- In Autism-Biomedical-Europe , " Sass and Rem "

wrote:

>

> Thanks Sharon, thanks for that. He's on both of those. It may well

be a

> phenol or sulphation problem as both of those are issues for Tom.

I'm

> sorry everyone - I feel like I'm being really negative about all

your

> suggestions. But I'm thinking this is an open forum and, hopefully

> others with sleep probs are reading these and somebody somewhere

will

> get advice that will help. Thanks for all your time and advice,

SARA

>

> Re:sleep

> >

> > Hi ,

> >

> > Just ideas - this is what helped for us.

> >

> > No soya, Houston enzymes and mag sulphate bath got Eddie

sleeping.

> > Also dark quiet room and he slept in our bed.

> >

> > When he never slept we coped by taking turns in the night so we

> each

> > had 3.5hrs.

> > Best wishes,

> > Sandy

> >

>

January 16, 2008

--Hi Jane,

Don't know if it's Night nurse.I just looked it up and it says not

for children ,sorry to suggest this,very irresponsible of me. I just

looked it up It contains Diphenhydramine Hydrochloride which it says

is an antihistamine with sedating effects.Might be helpful for Mums.

Sharon.

- In Autism-Biomedical-Europe , Jane Hogan

wrote:

>

> Is Nytol in Night Nurse - that stuff is lethal!

>

> [Autism-Biomedical- Europe] Re:sleep

>

> > >

>

> > > Hi ,

>

> > >

>

> > > Just ideas - this is what helped for us.

>

> > >

>

> > > No soya, Houston enzymes and mag sulphate bath got Eddie

>

> sleeping.

>

> > > Also dark quiet room and he slept in our bed.

>

> > >

>

> > > When he never slept we coped by taking turns in the night so

we

>

> > each

>

> > > had 3.5hrs.

>

> > > Best wishes,

>

> > > Sandy

>

> > >

>

> >

>

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January 16, 2008

i tried everything to help my son to sleep, but felt they were all temporary

measures (diet

changes, melatonin etc). it wasn't until we started our full time therapy

programme and kept

him inside the house, not going to school, busy shops, etc. after 3 weeks of

being in a

predictable, basic environment, he slept through the night for the first time

since he was

born. i realised that the poor fella was on sensory overload everytime he went

outside,

processing sounds, sight, being in an environment that he couldn't control. as

soon as those

stimulus were removed, he settled right down.

now with a combination of diet, therapy and controlling his exposure to

environments,

building them up very slowly, he sleep through every night and goes to sleep at

the same

time as his siblings. life feels a whole lot more manageable with a solid bit

of sleep.

karenza

January 17, 2008

You have reminded me that Edith (who was never so bad -- she would go to

sleep very quickly, then wake at 2.30am approx and go back to sleep

2,3,4,5 hours later ...or not) was never exhausted and worse as I

expected but in a way calmer. I used in the beginning to worry that she

would be worse because she was so tired but...........maybe better is

pushing it but certainly no worse. I concluded that when she was tired

she didn't have the energy to buzz in her head so much and her trains of

consciousness were reduced to just one or two instead of the normal half

dozen

Sally

Sass and Rem wrote:

>

> Thank you, .

> oh your situation is TERRIBLE. Are you alone? How do you sleep? How do

> you cope? You always seem so even tempered. I remember thinking that

> when I met you at A. Wakefield’s trial too. How do you do it? I am

> like a stressed, frantic, angry lunatic half the time.

>

> I think it’s hard for people to imagine that darkness and bedtime

> routines are not the answer but Tom gets so manic or hyper at bedtime.

> He becomes unreachable. He is very “buzzy”.

>

> What is more interesting

> for us is that on the sleep deprived days he will have no seizures or

> just very small ones which is so unlike what you would expect with

> epilepsy and sleep deprivation. When he does sleep, he has more

> seizures .... now how is this possible?

>

> That is FASCINATING!!!!! The therapists tell me time and time again

> that Tom is at his best after a night of poor sleep. (They have to

> tell me because I am too zonked to notice). They say the difference

> isn’t small but remarkable.

>

> , do you have any help at all. At least most days of the week I

> have a therapist coming in for some of the time, though obviously not

> on Sundays and often not on other days either. I am sure this must be

> a very good case for direct payments from social services. I can just

> about get through the day on my 1 – 3 hours of sleep on the worst

> days. Get through means give Tom meals and supps and almost nothing

> else. The house falls apart. It is a tip by the end of the day. How do

> you do it with NO sleep?

>

> I do remember you posting about this a while back and, at tthat time,

> Tom didn’t have severe sleep problems. How do you look so well on such

> a long period of sleep deprivation?

>

> Anyway, thanks for letting me know I’m not alone. Nor are you. As

> Darla once said we should all meet up in the middle of the night and

> our kids can have a play date!

>

> Thanks ,

>

> SARA x

>

> ------------------------------------------------------------------------

>

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.5.516 / Virus Database: 269.19.5/1228 - Release Date: 16/01/2008

09:01

>

January 17, 2008

I concluded that when she was tired

she didn't have the energy to buzz in her head so much and her

trains of

consciousness were reduced to just one or two instead of the

normal half

dozen

Tom's better in the sense that he's more alert, happier, more

communicative and more responsive in therapy - so not tired AT ALL I'd

say- although he can look tired i.e. he can have dark circles under his

eyes and a pale face.

January 18, 2008

Dear Sara and ,

I've been thinking about this whole not sleeping thing. Kolja will

usually sleep through a night now--not a great sleep, but generally

11 to 5 or 6, sometimes miraculously 7--and I've been trying to

pinpoint why.

I think just general improved health is one part of it (resulting

mostly from chelation and viral protocols, I think), and the other

things I mentioned in my last letter (including, which I forgot,

having yeast well under control), but it also just occured to me that

forcing Kolja to be more hyper during the day has helped.

Have you tried giving fairly large doses of Bs first thing in the

morning? And maybe a good size dose of DMG or TMG? These might

help. Also, CoQ10 and carnitine first thing in the morning might

help, especially as CoQ10 is supposed to be related to melatonin 12

hours later or something.

The best ds has ever slept is during HBOT. I'm not sure why that

is, but maybe a part of it was the hard work his body was doing with

2 dives a day. I also slept like a rock during those times, even

though I wasn't at 100% oxygen. Not sure what was happening,

perhaps only the fact that I had the chance to sleep.

Anyway, maybe some sort of protocol to produce hyperactivity during

the day, and another to reduce it at night (5htp as I mentioned

before has helped here, but also GABA, mag, etc) might help.

I would also consider trying to get any help possible from absolutely

any source to engage your child as manically as possible during the

days, even if it's only for a short burst like one week, just to try

to break the cycle somewhat. Family, friends, siblings,

therapists? Since we've pulled Kolja far enough along to make him

able to laugh, we've seen sleep improvements. I think part of it is

the releasing of endorphins. He feels better, less anxious, and

therefore can sleep more soundly.

I've often thought that the best therapist I could hire for my son

would be a hyperactive, overachieving, former Olympic gymnast who

loves kids. Someone who could expend the incredible energy that it

takes (beyond normal human capacity, IMO) to engage Kolja all day and

do the things that will keep him happy (jumping, throwing him in the

air, running up and down hills, etc).

Not sure if any of this will be of any help at all. Do know that

I'm thinking of you both. Everything becomes so very difficult with

no sleep :-(

Fondly,

Anita

> >

> > Thank you, .

> > oh your situation is TERRIBLE. Are you alone? How do you sleep?

> How do

> > you cope? You always seem so even tempered. I remember thinking

> that

> > when I met you at A. Wakefield's trial too. How do you do it? I

am

> like

> > a stressed, frantic, angry lunatic half the time.

> > I think it's hard for people to imagine that darkness and bedtime

> > routines are not the answer but Tom gets so manic or hyper at

> bedtime.

> > He becomes unreachable. He is very " buzzy " .

> > What is more interesting

> > for us is that on the sleep deprived days he will have no

seizures

> or

> > just very small ones which is so unlike what you would expect with

> > epilepsy and sleep deprivation. When he does sleep, he has more

> > seizures .... now how is this possible?

> > That is FASCINATING!!!!! The therapists tell me time

> and

> > time again that Tom is at his best after a night of poor sleep.

> (They

> > have to tell me because I am too zonked to notice). They say the

> > difference isn't small but remarkable.

> > , do you have any help at all. At least most days of the

week

> I

> > have a therapist coming in for some of the time, though obviously

> not on

> > Sundays and often not on other days either. I am sure this must

be

> a

> > very good case for direct payments from social services. I can

just

> > about get through the day on my 1 - 3 hours of sleep on the worst

> days.

> > Get through means give Tom meals and supps and almost nothing

> else. The

> > house falls apart. It is a tip by the end of the day. How do you

> do it

> > with NO sleep?

> > I do remember you posting about this a while back and, at tthat

> time,

> > Tom didn't have severe sleep problems. How do you look so well on

> such a

> > long period of sleep deprivation?

> > Anyway, thanks for letting me know I'm not alone. Nor are you. As

> Darla

> > once said we should all meet up in the middle of the night and

our

> kids

> > can have a play date!

> > Thanks ,

> > SARA x

> >

>

January 18, 2008

Good evening Sara or should it be goodnight! So sorry to hear that

your night was not better.

We had a better night except that even though he can be snoring away and

eyes shut completely, shallow breathing and all, his feet continue to

tap away intermitently through the night (as you would to music)!

Would this mean that he does not go into deep sleep completely?

Sara, I can't stop laughing at the scene of you and Tom, with his

jumping up and down and telling you " you must get up " , fingers holding

your eyelids open and all - sorry I know it is not funny when it is

going on but you are right it really has to make you laugh about it

esp. when you are telling someone about it the next day. How do these

kids keep going?! Does Tom nap during the day at all?

The 8 hrs/week was a squeeze to get out of SS as it is. We were

assessed and it was decided that 8 hours was the most they could give us

at the time, then afterwards it was recognised that 1 carer would not

manage Norman and that he required 2 carers at the same time to manage

him. They then turned round and said because it required 2 carers the

hours would be halved i.e. 4 hrs a week x 2 carers. I refused to

take this and asked to take this to an appeal panel. Shortly after

they came back agreeing to the 8hrs x 2 carers. Quite honestly, I

got really fed up of fighting the system on all sides but besides all

this, my daughter also feels that her space has been invaded and it

involves a lot of juggling bodies around so as not to get in each

other's way, so an increase of hrs would create more stress on all of

us. But now that we decided to home school Norman since beg. January, I

could probably get the carers to come whilst daughter is at school so

can afford to beg for more hrs, as much as I hate the invasion of the

little privacy that I have left!

TCM is traditional chinese medicine. We had a short burst of this and

chinese acupuncture, it had a remarkable effect on Norman's energy

levels, I have to say the brew from the herbs was disgusting! but Norman

suddenly went from a severely lethargic child, to one with lots of

energy, his sleep had been alright at the time. We had to stop the

treatment though, only because we were going to start the ketogenic diet

and it would have been difficult to see the cause and effect of the diet

with the TCM but also it would have been difficult to work out the

carbohydrate content from the herbal teas. The acupunture Norman had

was a mixture of the acupuncture we all know using a needle (just on

the scalp but I had to hold his hands for the 20min treatment to avoid

him brushing the needles off) and because he would not be able to keep

still, for the other parts of his body (arms and legs) they used a

traditional herbal wick (like a candle wick) which is applied at the

acupunture points (but this was apparently a treatment that was rare to

find and not many chinese practiioners of TCM had experience in it).

Yes I've done cranial osteopathy many years ago when Norman was just

over 2 yrs at the Osteopathic Centre for Children in London. It was

difficult to say what it helped, it certainly didn't improve his gut

issues which is the reason we went there, but then again his glue ear

problems appeared to subside. I do remember being told that after

treatment he would be worn out but this was not our experience. One

of the spookiest things we were told after one of the treatments (which

I still cannot quite grasp) was that Norman's soul/spirit was racing

infront of him and he (his physical body) was desperately trying to

catch up but had great difficulty to. Spooky or what????!!!! It'd

be intresting to have another session of this now, as I have to say

Norman has many compex problems and at most times very difficult to see

gains through all of it. Are you considering c. osteopathy? I wonder

if the centre in London still exists?

take care,

emily xx

-- In Autism-Biomedical-Europe , " Sass and Rem "

wrote:

>

> Morning (and everyone), I've just had one of those marathon

nights

> so I'm feeling terrible! How about you? Norman and Tom are beginning

to

> sound quite alike. They are both terrible sleepers and are both better

> on the days after a terrible night. Tom is also a placid kid who only

> becomes hyper at bedtime. He was hyper last night before I eventually

> got him to sleep at about 10:00 pm and then he woke at midnight. From

> that time onwards he has been just wide awake. I tried for 5 hours to

> get him back to sleep but he is very dangerous with the light off

> because he jumps on the bed and falls off. He headbutts me too and is

> worse with the light on because he hates the sight of me lying down

with

> my eyes shut and shouts " you must get up " which is a line from BAMBI.

He

> pulls my eyelids up and then pulls my hair til I sit up. It makes me

> laugh when I'm not tired.

> I'm surprised you don't get more time from direct payments, have they

> taken the seizures and the lack of sleep into account? I tried for

> direct payments once but didn't get it. I haven't had the energy to

> fight it as I've had too many battles with the LEA. What is TCM? Tom

> wouldn't tolerate acupuncture. Have you tried cranial osteopathy?

> SARA

>

> Re: sleep

>

> Oh no Sara, I think I come across that way " even tempered " but not

> all the time and maybe I conceal my feelings quite a bit. I have my

> moments which are not few off late btw.

>

> We too have hyper behaviour at bedtime which is most unlike his

> daytime behaviour when he is so placid and extremely lethargic and

> does not move from where you leave him. He is completely different

> at night, he stamps his feet all night long in bed and could very

> possibly be jogging from Milton Keynes to London in one night.

> LOL! We can tell when he is going to be on " night shift " and we've

> got to laugh about it, how he would make a good night security

> guard (although at the time it is not funny at all when being

> thumped all night long). I've had a black eye from his frantic arm

> waving and numerous times with my nose being head butted.

>

> My daughter (15yrs) comes up with all these reasons for Norman not

> sleeping like the latest one is she thinks that Norman may be afraid

> of the dark or be having night terrors or something.

>

> Norman has slept in my bed ever since the age of 2.5yrs when he was

> diagnosed with epilepsy as he has always experienced Tonic seizures

> during the night. My husband has to sleep on the spare bed!

>

> We get 8hrs a week of direct payments with two carers at the same

> time, it is something at least. Sorry, did you say you don't get

> direct payments, if so I'd really fight for it (I know, easier said

> than done). My husband can occasionally work from home. My

> daughter is also very supportive and enjoys being with Norman, she

> twirls him round the room to music and does the silly things that I

> don't have the time or energy to do with him. I am not very good at

> slowing down and guess I get through a lot of things on " auto

> pilot " . About looking well, oh no, you haven't seen me... I am a

> total wreck in the mornings. As it is I am not a morning person add

> on sleep deprivation and it is a disaster, I have to force myself to

> crawl out of bed and will even go to the extent of dropping my

> daughter to school in my pyjamas. Like you, I can just manage the

> meals and supplements and not much else which makes for so much

> guilt that there is no time shared for fun and the normal things

> other families do.

>

> I'm thinking of trying out TCM and/or acupuncture to see if it will

> help with the sleep.

>

> Here is hoping you have a good night's sleep tonight!

>

> emily xx

>

> >

> > Thank you, .

> > oh your situation is TERRIBLE. Are you alone? How do you sleep?

> How do

> > you cope? You always seem so even tempered. I remember thinking

> that

> > when I met you at A. Wakefield's trial too. How do you do it? I am

> like

> > a stressed, frantic, angry lunatic half the time.

> > I think it's hard for people to imagine that darkness and bedtime

> > routines are not the answer but Tom gets so manic or hyper at

> bedtime.

> > He becomes unreachable. He is very " buzzy " .

> > What is more interesting

> > for us is that on the sleep deprived days he will have no seizures

> or

> > just very small ones which is so unlike what you would expect with

> > epilepsy and sleep deprivation. When he does sleep, he has more

> > seizures .... now how is this possible?

> > That is FASCINATING!!!!! The therapists tell me time

> and

> > time again that Tom is at his best after a night of poor sleep.

> (They

> > have to tell me because I am too zonked to notice). They say the

> > difference isn't small but remarkable.

> > , do you have any help at all. At least most days of the week

> I

> > have a therapist coming in for some of the time, though obviously

> not on

> > Sundays and often not on other days either. I am sure this must be

> a

> > very good case for direct payments from social services. I can just

> > about get through the day on my 1 - 3 hours of sleep on the worst

> days.

> > Get through means give Tom meals and supps and almost nothing

> else. The

> > house falls apart. It is a tip by the end of the day. How do you

> do it

> > with NO sleep?

> > I do remember you posting about this a while back and, at tthat

> time,

> > Tom didn't have severe sleep problems. How do you look so well on

> such a

> > long period of sleep deprivation?

> > Anyway, thanks for letting me know I'm not alone. Nor are you. As

> Darla

> > once said we should all meet up in the middle of the night and our

> kids

> > can have a play date!

> > Thanks ,

> > SARA x

> >

>

January 18, 2008

Hi Anita,

Dear Sara and ,I've been thinking about this whole not sleeping thing. Kolja willusually sleep through a night now--not a great sleep, but generally11 to 5 or 6, sometimes miraculously 7--and I've been trying topinpoint why.I think just general improved health is one part of it (resultingmostly from chelation and viral protocols, I think), and the otherthings I mentioned in my last letter (including, which I forgot,having yeast well under control), but it also just occured to me thatforcing Kolja to be more hyper during the day has helped.

This is something we have not come to as yet but planning to. What exactly would the viral protocol entail? I think that our yeast issues are a lot improved than there have been over the last couple of months, but I guess you can never really know for certain, without testing.Have you tried giving fairly large doses of Bs first thing in themorning? And maybe a good size dose of DMG or TMG? These mighthelp. Also, CoQ10 and carnitine first thing in the morning mighthelp, especially as CoQ10 is supposed to be related to melatonin 12hours later or something.Norman is on therapeutic doses of B6 and also has additional B complex and magnesium. We've been on TMG for over 8 months at 750mg, maybe moving the dose to later in the day perhaps??? We've tried Idebenone, would it work the same way as CoQ10?The best ds has ever slept is during HBOT. I'm not sure why thatis, but maybe a part of it was the hard work his body was doing with2 dives a day. I also slept like a rock during those times, eventhough I wasn't at 100% oxygen. Not sure what was happening,perhaps only the fact that I had the chance to sleep.Anyway, maybe some sort of protocol to produce hyperactivity duringthe day, and another to reduce it at night (5htp as I mentionedbefore has helped here, but also GABA, mag, etc) might help.Did try GABA for a short period, when trying to see if it would calm seizures down some, but there was no effect on sleep. I have to say though that when he was on tryptophan there seemed to be some very subtle changes to his sleep but it was not really obvious. We ran out of the tryptophan, just at the time when starting complex amino acids which included the tryptohan.

What is interesting though is the first amino acid test thru IWDL indicated tryptophan levels to be Low at 24 (ref range 23 - 58) and 6months later after the amino complex his 2nd amino acid test (metametrix) tryptophan levels were improved at 33.

Given these results, would his first level of 24 have contributed or be the cause of the sleep problems? Unfortunately we ran out of the complex and our DAN felt it was worth doing a repeat amino test before supplementing further. Maybe with further amino's including tryptophan, the sleep problem could resolve, what do you think? We have only just restarted the complex amino's.

I would also consider trying to get any help possible from absolutelyany source to engage your child as manically as possible during thedays, even if it's only for a short burst like one week, just to tryto break the cycle somewhat. Family, friends, siblings,therapists? Since we've pulled Kolja far enough along to make himable to laugh, we've seen sleep improvements. I think part of it isthe releasing of endorphins. He feels better, less anxious, andtherefore can sleep more soundly.

Very good idea! but not such an easy task over here with the attitude people have towards epilepsy, that together with his extremely poor balance, coordination, his size and the fact that he needs someone to actually hold his hand to keep him from crashing to the floor and just being very bad at managing his body makes it a very hard task to keep him up or on his feet.I've often thought that the best therapist I could hire for my sonwould be a hyperactive, overachieving, former Olympic gymnast wholoves kids. Someone who could expend the incredible energy that ittakes (beyond normal human capacity, IMO) to engage Kolja all day anddo the things that will keep him happy (jumping, throwing him in theair, running up and down hills, etc).Not sure if any of this will be of any help at all. Do know thatI'm thinking of you both. Everything becomes so very difficult withno sleep :-(Thank you so much Anita, it helps to bounce ideas, suggestions back and forth and there are points here that are worth thinking of.

I hope you and your family are settling in into life over here and that your things arrived okay.

my best wishes to you,

emily xx Fondly,Anita

January 18, 2008

Dear Anita/Sara/ others sleep deprived out there,

Am trying to catch up so know this is quite soem days old now. s sleep used to be horrific too and I was trying to think why it was better now. When we lived in the Middle East which was until was 3 she had a side room of the house which had a split AC Unit (eg kinda wall mounted), our Central bedroom had the Air Conditioning attached to the houses system. We had to have the 2 small rooms fitted with extra cos at 50 dgerees in the hot months it was so awful, anyway the white noise was something that helped so maybe hypersensitivity with the hearing could be an issue..... would sometimes wake every single hour, always slept from 8-12 ish (good for a night out if we had the energy) then the wakening would be begin. Harry could sleep thru an earthquake but i cant, some nights I had to go into the other small bedroom and turn the AC up full blast and just leave her in her cot awake and tell harry to listen for her cos I just had to sleep now and then, absolutely horrific. Fortunately at that age would never have got out of her cot and I know a lot of our kids are not like that.

One thing we noticed once when we had a power cut here was that I put to bed in tights and a fleece cos it was so cold and she had a brilliant nights sleep, someone else mentioned this. deep pressure, not gettin g cold, being swaddled I dont know but it was os much better she went to bed like that for about a year afterwards.

Better biomed helped as did getting her gut better (OK its no way completely better but its better than it was).... So how is that? Yeast also a big nighttime waker-upper as Anita mentioned......

I have also had mentioned to me using things like a big cuddly pillow, fleecey blankets, big weighted duvets deffo help here.

One thing we did for ages, is very obsessive and if she can do somethin g like get oput her room she will. We used to have this stretchy band that held her door closed over but if she tried to open it we heard her. This worked really quite well cos she would get up, try the door and think whoops cannot go out go back to bed and back to sleep. Now many wont like that suggestion but we were pretty desperate at that stage and it wasnt safe for at night she would be down stairs playing videos etc and at worse 3 times she has flooded the bathrooms damaging 5 ceilings downstairs (oh yes) and 3 times has played with the fone and managed to do 999. I'll never forget coming downsatirs to a hunky policeman at 3 o'clock in the morning on the door step..... I told him the situation, burst out crying and blurted out oh no its a crime isnt it to fone 999 or something.... He had abit of a chuckle and said no thats actually wilfully calling 999 as in maliciously I dont think this is quite the same..... So you see, we were kinda backs to the wall by then.

Another thing we tried was giving higher doses of melatonin, I think it was 9 mg. I read on the Internet somewhere that some people had tried this and it was fine (sorry dont have the paper anymore), I guess it makes sense to me cos these children often have leaky guts, poor absorption etc. A psychologist I know said he also knows soem families where that works, altho I am not advocating any of this, you undersatnd just wanted to share..... We also for a long time used to get to sleep but then give her her 1-3 mg of melatonin around 12 cos that was just before her natural waking time, the she could normally manage thru until 5-6 am.

Its such a toughy, but it has gotten better for us but cant pinpoint why, I am really for Anitas suggestion of exercise. A good routine is also vital (sorry dont mean this to be patronising) and we did all the stuff like bath book bed, we still lie next to and have a read til she drops off which isnt long, thats not the best I know..... Also if she is awake at night, minimal chatting (hard cos she is so OCD), no videos, computer etc. If we have to come downsatirs (its all a lot harder when other kids are around too), she has to sit beside me in the kitchen and is not allowed to go to the playroom until Cameron is downstairs at 6ish.

Not sure if any of this is helpful but good luck am so thinking about you all.

Luv caroline

xxx

January 19, 2008

Oh my god, Caroline, policemen in the middle of the night! That one wins the prize! You gotta laugh or you'll go crazy.

Oh and about the tights helping sleep - we had a similar thing with socks, it was cold and so I put socks on and then he started asking for them every night. The tighter the better! He really likes them.

Hope things are better now for as far as sleep.

And for you single parents, I don't know how you do it, Bob was away on Friday night and it was one of 's bad nights, he was up at 3 then never back to bed. (This was my fault as I'd given him oxypowder so he was up at 3 doing his business.) Usually I would hand over to Bob around 7am but since he wasn't here....by 9am I was practically homocidal. It was horrible. Thankfully one of the tutors agreed to come around so I could get some sleep. Anyway, it just drove it all home to me, those of you doing this alone, or those of you with more than 1 kid on the spectrum, you deserve medals. You are the real heroes in this awful illness.