Sleep disturbances

[Guest guest]

Hi

If you are in North London you may wish to see Place for

OT, sounds like you have SLT sussed. If NHS diagnosis expected soon

save your £££. The OT at Place did independant assessement

for our Education Statement, some boroughs fund placements at this

specialist nursery also. Link below. Are you medically trained? You

sound knowledgeable.

HTH

http://www.speech-lang.org.uk/

[Guest guest]

Dear Darla

As many have said I do admire that you have been so quick off the mark and you are definitely doing the right thing in trying to help your child in this way eg biomedically.

I am not sure how you feel personally following the diagnosis, I know I thought I would die and had so many things that I had to sort out, that when I think back now probably lots of people said to me what I am now going to say to you... It sounded so condescending back then, I dont mean it to, but just give yourself a chance to cope and think and dont feel guilty if you dont put it all in place on the same day!! Saying that I understand the urgency and many of us here wish we had the gift of time to satrt over...

So here goes, is now 8 and still has severe gut probs but loads baetter than initially, I also cant begin to describe how horrendously she slept. When was 3 months old we moved to live in the Middle East. It used to take me forever to get her to sleep, she had two bottles in the night around 1 and 4 ish, most nights she never slept between the two and would then be up for the day by 5 or 6. Hell on earth!! We moved house before she was 1 and we had 3 bedrooms in this huge open planned mansion. The two bedrooms at the side had split AC units (wall mounted air conditioning). there was loadsa glass in the house, so when it was 50 C outside we needed these extra ACs. They were really noisy. at this stage woke up nearly every hour, I had to go into the opposite room to hers with the other noisy AC on full blast and ignore her, otherwise I would never have slept. Its funny to think back on that, we still have some sleep issues but I cant think how I survived back then!

Biomed helped a lot with s gut initially, but always up and down and impaction and we know without seeing the specialist that we soon will see, that she is one of the bad gut kids. Hopefully the improvements we are seeing now with Singulair will only get better. Addressing your childs GI health will help your child in every way, from behaviour to sleep to feeding. I think a lot of what you are describing is pain from the gut. I bet he postures too. Does he hold himself in an odd position with lots of pressure on his tum? Try to get a referral to a paediatric Gastro... We ahve done this but will be going to the States hopefully soonish to see someone familiar with ASD kids.

Dont know if I have said anything useful, but if I had to put in my tuppence worth i'd say a) Read the Treating Autism website and the Autism One presentations will be useful too Get some help with diet/supplements/testing c) See how this goes and then tackle sleep. Maybe some of the issues will resolve themselves....

If you want to talk more then co9ntact me off list, I am happy to share our experiences with you as many of us here will be. WE so know what its like to be where you are now.... And the best advice anyone ever told me was it will get better and you will feel differently a year from now.

Good Luck Darla we are all rooting for you and here to help.

With Kind Regards

Caroline Traa, Aberdeenshire

xxx

[Guest guest]

BTW what is GERD?

[Guest guest]

> Obviously I don't want to waste the money if his sleep disturbances may

> settle down with some biomed interventions but I also don't want to overlook the

> seriousness of his sleep pattern and be kicking myself in a year's time with

> regret.

We had serious problems before we removed dairy. Have you tried doing that?

> -does 360 degree pivots while laying on his stomach, scoots down to the foot

> of the bed, almost falling off - this is not just once in a while, it is

> consistently throughout the night and I have to reposition him frequently

Ds did that even as a very little baby. Stopped with diet/biomed. I guess it was reflux and serious dysbiosis!

> -wakes in a fit of *serious* distress and crying. This includes violent and

> abrupt jerking of his body. He settles quickly with a cuddle and a little

> singing.

Same here. Settled after going dairy free. Interestingly, it returned

for a few nights when we tried introducing some homemade yogurt (goats)

- after half a teaspoon of that the crying and jerking returned for the

night! That was after months and months of sound sleep.

> -wakes up "desperate"- hits me, pulls my hair, scratches at my face or

> tries to crawl over me

We had this for a few nights when introducing LDN - low dose naltrexone

(common occurence. lots of people report for a few days)- as it is an

opiate blocker it could have something to do with peptides or food

allergies. Just a guess.

> - it takes him two to three hours to go to sleep once he is tired (this is

> not always the case and it goes in very obvious cycles)

>

> - he will sometimes lay dead still, eyes open for a very long time (up to an

> hour) before falling asleep

>

Was exactly the same here!!!! Sorted through diet/ biomed! We really should chat....

> So, if your kid was doing all this stuff would you wait till after doing

> some dietary interventions to see what happens or would you go ahead and pay for

> the private appt?

DIET FIRST! you want to save yourself every penny you can.

Natasa>

[Guest guest]

And i would suggest trying epsom salts in the bath at night: try a box from Boots at about £1.50 and if he puts up with them, order in bulk from justasoap.com.

They seem to help with my son's sleep.

By the way my son was a terrible sleeper and I recognise a lot of what you describe. He is now much improved (he's coming up to 7).. I can't put it down to current diet as we were GFCF at the time he slept terribly and he is currently having dairy.But who knows -maybe he's still benefiting from the yeras of GFCF he had (we may try it again or the SCD).

One anecdote - an acquaintance whose two year old with autism would only eat wheat and dairy products and whose mother couldn't face trying GFCF at that point is now doing it on medical advice because he got very ill and was in pain I think the NHS did tests and found these foods were problematic. he's improving.

margaret

Re: Sleep disturbances

> Obviously I don't want to waste the money if his sleep disturbances may > settle down with some biomed interventions but I also don't want to overlook the > seriousness of his sleep pattern and be kicking myself in a year's time with > regret. We had serious problems before we removed dairy. Have you tried doing that?> -does 360 degree pivots while laying on his stomach, scoots down to the foot > of the bed, almost falling off - this is not just once in a while, it is > consistently throughout the night and I have to reposition him frequentlyDs did that even as a very little baby. Stopped with diet/biomed. I guess it was reflux and serious dysbiosis!> -wakes in a fit of *serious* distress and crying. This includes violent and > abrupt jerking of his body. He settles quickly with a cuddle and a little > singing.Same here. Settled after going dairy free. Interestingly, it returned for a few nights when we tried introducing some homemade yogurt (goats) - after half a teaspoon of that the crying and jerking returned for the night! That was after months and months of sound sleep.> -wakes up "desperate"- hits me, pulls my hair, scratches at my face or > tries to crawl over meWe had this for a few nights when introducing LDN - low dose naltrexone (common occurence. lots of people report for a few days)- as it is an opiate blocker it could have something to do with peptides or food allergies. Just a guess.> - it takes him two to three hours to go to sleep once he is tired (this is > not always the case and it goes in very obvious cycles)> > - he will sometimes lay dead still, eyes open for a very long time (up to an > hour) before falling asleep>Was exactly the same here!!!! Sorted through diet/ biomed! We really should chat.... > So, if your kid was doing all this stuff would you wait till after doing > some dietary interventions to see what happens or would you go ahead and pay for > the private appt? DIET FIRST! you want to save yourself every penny you can.Natasa>__________ NOD32 1.1579 (20060605) Information __________This message was checked by NOD32 antivirus system.http://www.eset.com

[Guest guest]

In a message dated 06/06/2006 08:52:13 GMT Standard Time, rexel45@... writes:

Thanks for saying this. I need to slow down, my husband said this to me yesterday as well. The thing is, like others, probably I also feel really relieved. I am with 24 hours a day and I have been so desperate to understand what was wrong. In my own reading I kept getting thrown off the ASD dx because *does* like cuddling and does have some eye contact, and he does respond *sometimes*....I was finding it so hard that I'd began to think something was seriously wrong with *me*. I've seen all the other mothers in my antenatal group go on to have second children by now and I'm sitting here thinking I have no clue how they are managing. I kept telling my husband that *needed* something else...some *other* type of stimulation and he just kept telling me to put it out of my head, that I was tormenting myself over nothing, that was fine, that I was giving him everything he needed... at least now I understand and he is already responding to what little changes we are able to make in our communication with him and I don't feel that awful desperation.

I think the grief comes over both of us in waves....in an unexpected moment my eyes just well with tears and I feel so sorry for the little boy that I thought he was and accepting the little boy that I now know him to be. And of course the anger...

Dear Darla

What you write describes how every mother (especially) feels when their kid is diagnosed... I have written a little articel for my hubbys works mag azine yonks ago now and I am going to email it to you personally, not because I think I am a fab writer but because you are right, we all think something was wrong with us, that we were crap parents... The diagnosis will help that. I now think I am one of the best parents I know by the way!! You are going to in due time absorb this stuff and help your child as best you can. He will get better than he is now, and you will one day stop thinking that in some way you are/were mad, that its your fault blah blah.

Right now not a lot is comforting and I felt that life was very black and so alone, I was living in Oman and all I did was call home and cry down the phone for a month... My sister had to tell me to stop calling her at work, poor soul she works at British Gas, plenty of irate customers stressing her out the majority of the time, then my grief too to cope with!

It takes a long time but you will find the energy and the will to do stuff. I devoted all my energy to satrting an ABA programme (although we went GFCF a week after was diagnosed, did testing, supps etc)... This took a while as we had first had to move house, country, job for Harry, buy a house etc here, decide where to live, boy it was hard, but you always get there and when your child progresses its so worth it, thank God we did what we did.... I wish I had done more and better biomed earlier but heh thats a useless thought so I just bin those ones.

Call me if you fancy a chat or a sob or anything, but it will get better, go slow and every day do one nice thing just for you, meet a friend for a coffee, make that happen, you need to refresh yourself and stay sane.

Lotsa love, we are all here for your questions, rants anything...

Caroline, Aberdeenshire

xxx

[Guest guest]

In a message dated 06/06/2006 08:52:13 GMT Standard Time, rexel45@... writes:

Thanks for saying this. I need to slow down, my husband said this to me yesterday as well. The thing is, like others, probably I also feel really relieved. I am with 24 hours a day and I have been so desperate to understand what was wrong. In my own reading I kept getting thrown off the ASD dx because *does* like cuddling and does have some eye contact, and he does respond *sometimes*....I was finding it so hard that I'd began to think something was seriously wrong with *me*. I've seen all the other mothers in my antenatal group go on to have second children by now and I'm sitting here thinking I have no clue how they are managing. I kept telling my husband that *needed* something else...some *other* type of stimulation and he just kept telling me to put it out of my head, that I was tormenting myself over nothing, that was fine, that I was giving him everything he needed... at least now I understand and he is already responding to what little changes we are able to make in our communication with him and I don't feel that awful desperation.

I think the grief comes over both of us in waves....in an unexpected moment my eyes just well with tears and I feel so sorry for the little boy that I thought he was and accepting the little boy that I now know him to be. And of course the anger...

Dear Darla

What you write describes how every mother (especially) feels when their kid is diagnosed... I have written a little articel for my hubbys works mag azine yonks ago now and I am going to email it to you personally, not because I think I am a fab writer but because you are right, we all think something was wrong with us, that we were crap parents... The diagnosis will help that. I now think I am one of the best parents I know by the way!! You are going to in due time absorb this stuff and help your child as best you can. He will get better than he is now, and you will one day stop thinking that in some way you are/were mad, that its your fault blah blah.

Right now not a lot is comforting and I felt that life was very black and so alone, I was living in Oman and all I did was call home and cry down the phone for a month... My sister had to tell me to stop calling her at work, poor soul she works at British Gas, plenty of irate customers stressing her out the majority of the time, then my grief too to cope with!

It takes a long time but you will find the energy and the will to do stuff. I devoted all my energy to satrting an ABA programme (although we went GFCF a week after was diagnosed, did testing, supps etc)... This took a while as we had first had to move house, country, job for Harry, buy a house etc here, decide where to live, boy it was hard, but you always get there and when your child progresses its so worth it, thank God we did what we did.... I wish I had done more and better biomed earlier but heh thats a useless thought so I just bin those ones.

Call me if you fancy a chat or a sob or anything, but it will get better, go slow and every day do one nice thing just for you, meet a friend for a coffee, make that happen, you need to refresh yourself and stay sane.

Lotsa love, we are all here for your questions, rants anything...

Caroline, Aberdeenshire

xxx

[Guest guest]

Darla, have you tried switching to goats milk formula - some kids

tolerate that one better, it is said to have much less bad casein in it

- it didn't work for us but worth trying.

When we cut out dairy we actually switched to coconut milk! It worked -

he was only 18 months at the time and did not complain... interestingly

enough he lost interest in his bottle soon after that.

Natasa

>

> Hi Natasa,

>

> I was really relieve to hear your story - so similar to ours! I'm

> encouraged to hear that things have changed with the removal of dairy.

We are not

> able to remove dairy because lives on 8 to 9 bottles of milk a

day. I'm

> not keen to try to switch his formula without supervision so I'm

waiting until

> I get advice from the biomed doc that we are going to see. I have,

however,

> started him on the enzymes so I'm hoping that will at least start

healing his

> gut and help with the serious caesin overload that he has.

>

> Regards,

> Darla

>

> In a message dated 05/06/2006 17:18:11 GMT Standard Time,

> neno@... writes:

>

> > Obviously I don't want to waste the money if his sleep disturbances

may

> > settle down with some biomed interventions but I also don't want to

> overlook the

> > seriousness of his sleep pattern and be kicking myself in a year's

time

> with

> > regret.

>

>

>

>

> We had serious problems before we removed dairy. Have you tried doing

that?

>

[Guest guest]

Darla, have you tried switching to goats milk formula - some kids

tolerate that one better, it is said to have much less bad casein in it

- it didn't work for us but worth trying.

When we cut out dairy we actually switched to coconut milk! It worked -

he was only 18 months at the time and did not complain... interestingly

enough he lost interest in his bottle soon after that.

Natasa

>

> Hi Natasa,

>

> I was really relieve to hear your story - so similar to ours! I'm

> encouraged to hear that things have changed with the removal of dairy.

We are not

> able to remove dairy because lives on 8 to 9 bottles of milk a

day. I'm

> not keen to try to switch his formula without supervision so I'm

waiting until

> I get advice from the biomed doc that we are going to see. I have,

however,

> started him on the enzymes so I'm hoping that will at least start

healing his

> gut and help with the serious caesin overload that he has.

>

> Regards,

> Darla

>

> In a message dated 05/06/2006 17:18:11 GMT Standard Time,

> neno@... writes:

>

> > Obviously I don't want to waste the money if his sleep disturbances

may

> > settle down with some biomed interventions but I also don't want to

> overlook the

> > seriousness of his sleep pattern and be kicking myself in a year's

time

> with

> > regret.

>

>

>

>

> We had serious problems before we removed dairy. Have you tried doing

that?

>

[Guest guest]

Hello

I think that it could be caused by a drop in your blood sugar during the night.

I get that

without alcohol, but definitely always do with the one glass of wine. I wake up

a few hours

after I go to sleep and I am in a sweat. I was reading about it and it can

definitely be caused

by night time hypoglycemia. I think it was Dr Rand who suggests eating a small

amount of

protein before bed, like a bit of cottage cheese or handful of nuts and that

might help

preventing these from happening. Alcohol is one of the things that cause night

sweats and I

am pretty sure the reason is tied to blood glucose levels.

Hope this helps!

Callista

[Guest guest]

Yes, a low blood suger level sounds correct. I suspected as such.

I'll try your suggestion of protein before sleeping. Thanks!

[Guest guest]

Hi Lee,

Yes I had been taking Mg before bed, but stopped after revising my

overall supplement intake. Maybe I should it start up again. Thanks

for the suggestion.

[Guest guest]

Hi,

I take 500mg Magnesium before bed and still get night sweats once in awhile. It

helps sleep

but I don't think it helps with night sweats.

Callista

>

> Hi Lee,

>

> Yes I had been taking Mg before bed, but stopped after revising my

> overall supplement intake. Maybe I should it start up again. Thanks

> for the suggestion.

>

>

>

[Guest guest]

I get this a lot and not only after drinking alcohol, though it does

seem to make it worse. I sometimes have a pulse rate of around 100 or

so when this happens and I my pillow is usually saoked. I have had a

sleep study done which showed no apnoea or de-saturation of oxygen

levels so I am no further forward to understanding it. It has been a

problem on-and-off for about 3-4 years; since before I got a hypo

diagnosis so maybe there's a connection, maybe not. Sometimes, I get

a racing heart beat just from climbing the stairs which is strange,

since I can jog 100yds or so without this being really noticeable. I

too had DHEA and cortisol levels in-range (but only just).

Beats me,

Graham

>

>

> Hello all,

>

> I have recently been waking up around 3 hours after falling asleep

> with hot sweats, and finding it difficult to get back to sleep. It

> feels like there is lots of adrenalin running through my system.

> Temperature is around 36.0. Strangely, It only happens after i drink

> alcohol. It doesn't have to be much - last night for example i

drank 2

> glasses of red wine with my dinner. This appears not to be an

adrenal

> stress problem - I was tested earler this year and i was within the

> normal ranges for cortisol and DHEA.

>

> Have any of you suffered from anything similar or know of what this

> could be?

> Thanks

>

>

[Guest guest]

Hi Graham,

I sometimes get an increased heart beat as well, although not all the

time. I am going to ask my nutritionist and GP about this. Maybe they

will know what it is.

I'll let you know if i find out anything interesting.

cheers

paul

[Guest guest]

Thanks and good luck.

Graham

>

> Hi Graham,

>

> I sometimes get an increased heart beat as well, although not all the

> time. I am going to ask my nutritionist and GP about this. Maybe they

> will know what it is.

>

> I'll let you know if i find out anything interesting.

>

> cheers

> paul

>

[Guest guest]

How long ago sionce you had your cortisol and DHEA test Graham. You could be on too much thyroid medication. Can you list all your medication and supplements and the times you take them during the day.

See http://www.sleepdisordersguide.com/night-sweats-men.html and also http://www.medicinenet.com/script/main/art.asp?articlekey=57394

Luv - Sheila

I get this a lot and not only after drinking alcohol, though it does seem to make it worse. I sometimes have a pulse rate of around 100 or so when this happens and I my pillow is usually saoked. I have had a sleep study done which showed no apnoea or de-saturation of oxygen levels so I am no further forward to understanding it. It has been a problem on-and-off for about 3-4 years; since before I got a hypo diagnosis so maybe there's a connection, maybe not. Sometimes, I get a racing heart beat just from climbing the stairs which is strange, since I can jog 100yds or so without this being really noticeable. I too had DHEA and cortisol levels in-range (but only just).Beats me,Graham>>

..

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[Guest guest]

HI

I sent a couple of links to Graham on the Forum that might help you.

Luv - Sheila

Hi Graham,I sometimes get an increased heart beat as well, although not all thetime. I am going to ask my nutritionist and GP about this. Maybe theywill know what it is.I'll let you know if i find out anything interesting.cheerspaul

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[Guest guest]

Hi Sheila,

It's over a year since my DHEA & cortisol test. As I said earlier,

this sweating has been a problem since before I started taking any

thyroid meds so I don't think I'm over-dosing. My last bloods showed

T4 & T3 in the lower tertile too, and still reducing from previous

tests so again, I don't think I'm over-dosing. However, I'm due for

another test so am having blood drawn on Thursday and we'll see what

that shows. Incidentally, I don't think I've ever told you but I

recently discovered that when TPo antibodies were checked 2 years ago

the result was 259iu/ml which is way outside the normal range of <30

so I think it's fair to assume that I have Hashimoto's although GP

says the only way to be certain is a biopsy. Uggh!! At the moment I

am only taking Armour (4grns a.m., 1 grn at night) and I am beginning

to think I may need some HC and /or Nutri-adrenal again. I really

must get to see Dr P sometime.

Graham

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[Guest guest]

Hi Graham

I haven't heard about doing a biopsy to check if you have true Hashimoto's - I thought the presence of antibodies to your thyroid was sufficient - however, we learn every day. Remember not to take your Armour 24 hours before you have your blood drawn wona't you to get a true reading. Dr Peatfield is doing a clinic at my Home in Ickornshaw, Yorkshire during the first week in december if you would like an appointment ~ and if anybody else would like to see him, let me know.

Luv - Sheila

Hi Sheila,It's over a year since my DHEA & cortisol test. As I said earlier, this sweating has been a problem since before I started taking any thyroid meds so I don't think I'm over-dosing. My last bloods showed T4 & T3 in the lower tertile too, and still reducing from previous tests so again, I don't think I'm over-dosing. However, I'm due for another test so am having blood drawn on Thursday and we'll see what that shows. Incidentally, I don't think I've ever told you but I recently discovered that when TPo antibodies were checked 2 years ago the result was 259iu/ml which is way outside the normal range of <30 so I think it's fair to assume that I have Hashimoto's although GP says the only way to be certain is a biopsy. Uggh!! At the moment I am only taking Armour (4grns a.m., 1 grn at night) and I am beginning to think I may need some HC and /or Nutri-adrenal again. I really must get to see Dr P sometime.Graham> >> > > > Recent Activity> a.. 7New Members> b.. 1New Files> Visit Your Group > > Get cancer support> > Connect w/ others> > find help & share> > FruitaBü Parents> on > > teaching families> > how to eat healthy.> > Sitebuilder> Build a web site> > quickly & easily> > with Sitebuilder.> . > > > > --------------------------------------------------------------------> > > No virus found in this incoming message.> Checked by AVG Free Edition. > Version: 7.5.488 / Virus Database: 269.15.5/1084 - Release Date: 21/10/2007 15:09>

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[Guest guest]

Hi Sheila,

I never take Armour before blood test but thanks for the reminder.

They're going to check ferritin and B12 again too, since the Endo

didn't give the exact figure to GP only said that they were low. I

remember that the ferritin was just out of range and B12 just in. I

think I would like to see Dr P please but it's a long way to come.

Could you let me have provisional dates please.

Graham

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[Guest guest]

....either 5th/6th or 9th/10th December. What about gliding over and dropping off at Leeds/Bradford airport (Yeadon)??? Or bring your wife over and enjoy North Yorkshire. We have a good B and B in the village.

Luv - Sheila

Hi Sheila,I never take Armour before blood test but thanks for the reminder. They're going to check ferritin and B12 again too, since the Endo didn't give the exact figure to GP only said that they were low. I remember that the ferritin was just out of range and B12 just in. I think I would like to see Dr P please but it's a long way to come. Could you let me have provisional dates please.Graham> > >> > > > > > > Recent Activity> > a.. 7New Members> > b.. 1New Files> > Visit Your Group > > > > Get cancer support> > > > Connect w/ others> > > > find help & share> > > > FruitaBü Parents> > on > > > > teaching families> > > > how to eat healthy.> > > > Sitebuilder> > Build a web site> > > > quickly & easily> > > > with Sitebuilder.> > . > > > > > > > > ----------------------------------------------------------> ----------> > > > > > No virus found in this incoming message.> > Checked by AVG Free Edition. > > Version: 7.5.488 / Virus Database: 269.15.5/1084 - Release Date: > 21/10/2007 15:09> >> > > > > > > --------------------------------------------------------------------> > > No virus found in this incoming message.> Checked by AVG Free Edition. > Version: 7.5.488 / Virus Database: 269.15.5/1085 - Release Date: 22/10/2007 10:35>

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[Guest guest]

The 9th may be a possibility as it would have to be a w/e day.

Graham

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[Guest guest]

OK - I will book you in for the 9th and if you would let me know whether you would be travelling up that day or coming the night before, I will be able to let you know what is the best time.

Luv - Sheila

The 9th may be a possibility as it would have to be a w/e day.Graham>> ...either 5th/6th or 9th/10th December. What about gliding over and dropping off at Leeds/Bradford airport (Yeadon)??? Or bring your wife over and enjoy North Yorkshire. We have a good B and B in the village.> > Luv - Sheila > > >

..

No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.488 / Virus Database: 269.15.5/1085 - Release Date: 22/10/2007 10:35

[Guest guest]

I would have to come on the day.

Graham

> >

> > ...either 5th/6th or 9th/10th December. What about gliding over

and

> dropping off at Leeds/Bradford airport (Yeadon)??? Or bring your

wife

> over and enjoy North Yorkshire. We have a good B and B in the

village.

> >

> > Luv - Sheila

> >

> >

> >

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