Re: bad luck : i dont know what else to say

[Guest guest]

Breathing is huge.. it is the issue common in most neuro conditions and the one which is not even on conventional meds radar... has had great success with children with extremely severe problems... There is a file on this group. Advance Scotson  and there is a lot of information on 's thoughts about sleeping etc.

 

Perhaps this is something to be hopeful about?

 

Best wishes

 

 

 

Tracey

On Wed, Feb 3, 2010 at 10:28 AM, jcqcoops <jcqcoops@...> wrote:

 

Thats really interesting Tracey,I've never heard of this breathing link before!Thanks,Jaki

> > >> > >> > >> > > hie all> > > I just need to say this i am at a point where i am losing hope.> > > you see my childs case is a big puzzle that noone seems to have a

> > > clue and all the interventions we have tried do not work. Lets see> > > we have tried the following:> > > DMG, TMG, Super Nuthera Multi vitamins, Vitamin B6, Magnesium,> > > Gluthathione, Bright spark, Focus fomula, Epsom salts,

> > > Otomotetine, Lamotrigine, Melatonin, Gluten and dairy free diet> > > etc but sadly my child has not responded to any of these. She has> > > gotten worse in terms of hyperactivity, not sleeping and behaviour

> > > in the last 2 years...her school cannot cope with her, we cannot> > > get any investigations done on her - eeg, mri scans, blood tests -> > > as she fights people off its almost unbelievable and sounds like i

> > > am exaggerating but my child has got to be the worst case around.> > > It breaks my heart that noone can help her...I almost dont see the> > > need in continuing on this forum..dont get me wrong it is very

> > > very useful , informative and the support and advice is amazing ,> > > most of the things we have tried we found out about here. I wonder> > > if my daughter is just not only autistic but very very

> > > complex....the thing is we have not come across a case similar to> > > hers...the sleepless nights, bad reports from schoo,, etc.....i m> > > sorry > > >> > >> > >> >> >> >> > ------------------------------------> >> > DISCLAIMER> > No information contained in this post is to be construed as medical advice.

> > If you need medical advice, please seek it from a suitably qualified> > practitioner.> >

[Guest guest]

Breathing is huge.. it is the issue common in most neuro conditions and the one which is not even on conventional meds radar... has had great success with children with extremely severe problems... There is a file on this group. Advance Scotson  and there is a lot of information on 's thoughts about sleeping etc.

 

Perhaps this is something to be hopeful about?

 

Best wishes

 

 

 

Tracey

On Wed, Feb 3, 2010 at 10:28 AM, jcqcoops <jcqcoops@...> wrote:

 

Thats really interesting Tracey,I've never heard of this breathing link before!Thanks,Jaki

> > >> > >> > >> > > hie all> > > I just need to say this i am at a point where i am losing hope.> > > you see my childs case is a big puzzle that noone seems to have a

> > > clue and all the interventions we have tried do not work. Lets see> > > we have tried the following:> > > DMG, TMG, Super Nuthera Multi vitamins, Vitamin B6, Magnesium,> > > Gluthathione, Bright spark, Focus fomula, Epsom salts,

> > > Otomotetine, Lamotrigine, Melatonin, Gluten and dairy free diet> > > etc but sadly my child has not responded to any of these. She has> > > gotten worse in terms of hyperactivity, not sleeping and behaviour

> > > in the last 2 years...her school cannot cope with her, we cannot> > > get any investigations done on her - eeg, mri scans, blood tests -> > > as she fights people off its almost unbelievable and sounds like i

> > > am exaggerating but my child has got to be the worst case around.> > > It breaks my heart that noone can help her...I almost dont see the> > > need in continuing on this forum..dont get me wrong it is very

> > > very useful , informative and the support and advice is amazing ,> > > most of the things we have tried we found out about here. I wonder> > > if my daughter is just not only autistic but very very

> > > complex....the thing is we have not come across a case similar to> > > hers...the sleepless nights, bad reports from schoo,, etc.....i m> > > sorry > > >> > >> > >> >> >> >> > ------------------------------------> >> > DISCLAIMER> > No information contained in this post is to be construed as medical advice.

> > If you need medical advice, please seek it from a suitably qualified> > practitioner.> >

[Guest guest]

thanx for the reply

We are seeing a neurologist who suggested the MRI scan and lamotrigine as they are quering seizures.Up until christmas time last year we were seeing Consultant Psychiatrist who tried the route of melatonin (slow release) which didn`t work, then otomoxetine as opposed to ritalin and liquid melatonin which does not work most of the time at 9mg. We still seeing CAMHS but no medication which to be honest made an already difficult child worse

>>>>> hie all> > I just need to say this i am at a point where i am losing hope.> you see my childs case is a big puzzle that noone seems to have a> clue and all the interventions we have tried do not work.

Lets see> we have tried the following:> DMG, TMG, Super Nuthera Multi vitamins, Vitamin B6, Magnesium,> Gluthathione, Bright spark, Focus fomula, Epsom salts,> Otomotetine, Lamotrigine, Melatonin, Gluten and dairy free diet> etc but sadly my child has not responded to any of these. She has> gotten worse in terms of hyperactivity, not sleeping and behaviour> in the last 2 years...her school cannot cope with her, we cannot> get any investigations done on her - eeg, mri scans, blood tests -> as she fights people off its almost unbelievable and sounds like i> am exaggerating but my child has got to be the worst case around.> It breaks my heart that noone can help her....I almost dont see the> need in continuing on this forum..dont get me wrong it is very> very useful , informative and the support and advice is amazing> , most of the things we have tried we found

out about here. I> wonder if my daughter is just not only autistic but very very> complex....the thing is we have not come across a case similar to> hers...the sleepless nights, bad reports from schoo,, etc.....i m> sorry>>>>> > ------------ --------- --------- --------- --------- --------- ->>> No virus found in this incoming message.> Checked by AVG - www.avg.com > Version: 9.0.733 / Virus Database: 271.1.1/2664 - Release Date: 02/02/10 19:35:00>>

[Guest guest]

no that has never been a problem for her Sara>>>> hie all> I just need to say this i am at a point where i am losing hope.> you see my childs case is a big puzzle that noone seems to have a> clue and all the interventions we have tried do not work. Lets see> we have tried the following:> DMG, TMG, Super Nuthera Multi vitamins, Vitamin B6, Magnesium,> Gluthathione, Bright spark, Focus fomula, Epsom salts,> Otomotetine, Lamotrigine, Melatonin, Gluten and dairy free diet> etc but sadly my child has not responded to any of these. She has> gotten worse in terms of hyperactivity, not sleeping and

behaviour> in the last 2 years...her school cannot cope with her, we cannot> get any investigations done on her - eeg, mri scans, blood tests -> as she fights people off its almost unbelievable and sounds like i> am exaggerating but my child has got to be the worst case around.> It breaks my heart that noone can help her...I almost dont see the> need in continuing on this forum..dont get me wrong it is very> very useful , informative and the support and advice is amazing ,> most of the things we have tried we found out about here. I wonder> if my daughter is just not only autistic but very very> complex....the thing is we have not come across a case

similar to> hers...the sleepless nights, bad reports from schoo,, etc.....i m> sorry>>> ------------------------------------DISCLAIMERNo information contained in this post is to be construed as medical advice. If you need medical advice, please seek it from a suitably qualified practitioner.

[Guest guest]

thanx will try that.>>>> hie all> I just need to say this i am at a point where i am losing hope.> you see my childs case is a big puzzle that noone seems to have a> clue and all the interventions we have tried do not work. Lets see> we have tried the following:> DMG, TMG, Super Nuthera Multi vitamins, Vitamin B6, Magnesium,> Gluthathione, Bright spark, Focus fomula, Epsom salts,> Otomotetine, Lamotrigine, Melatonin, Gluten and dairy free diet> etc but sadly my child has not responded to any of these. She has> gotten worse in terms of hyperactivity, not sleeping and behaviour> in the last 2 years...her school cannot cope with her, we cannot> get any investigations done on

her - eeg, mri scans, blood tests -> as she fights people off its almost unbelievable and sounds like i> am exaggerating but my child has got to be the worst case around.> It breaks my heart that noone can help her...I almost dont see the> need in continuing on this forum..dont get me wrong it is very> very useful , informative and the support and advice is amazing ,> most of the things we have tried we found out about here. I wonder> if my daughter is just not only autistic but very very> complex....the thing is we have not come across a case similar to> hers...the sleepless nights, bad reports from schoo,, etc.....i m> sorry>>>------------ --------- --------- ------

DISCLAIMERNo information contained in this post is to be construed as medical advice. If you need medical advice, please seek it from a suitably qualified practitioner.

[Guest guest]

thanx

you know my daugther was assessed twice for autism be4 she was 8yrs old and they didnt think she was. Along came her 9th birthday and she went from putting together words to saying nothing the 10th birthday brought the very difficult behaviour she tries to run away from class just enjoys running around the house never sits still i class and she is a big strong girl! , poor sleeping and now she is the typical autistic picture and we have lost her once again. She has started menstruating ....and despite 9 g melatonin she be up all night and can sing all night and be extremely hyperactive the next morning...

From: MaddiganV@... <MaddiganV@...>Subject: Re: bad luck : i dont know what else to sayAutism Treatment Date: Wednesday, 3 February, 2010, 10:34

I think you will find that there are plenty of kids here who are or have been similar to your child we are one for starters.

is now 12 and it has taken me years to get to the bottom of many of his issues and we are still far from revealing all of them.

He was a 24/7 screaming, head banging, pooh smearing, naked, totally out of control child.

Today he is 85% happy and good humoured, affectionate, good eater, clothed, toilet trained child.

Lists like this are inspiring but you have to bear in mind some kids start a long way further back than others, like running a race with one leg, so it is going to take longer and will be full of false starts.

We did DMG and TMG in the early days, nothing, no change, GF no change, various supplements again no change this experimenting went on for years, then we had some tests ran, kept a food diary, started enzymes and slowly improvements came.

We may never cross the finishing line and have a recovered child but we will definitely have an amazingly improved child. Prof Newsons clinic at Nottingham told us was so handicapped we should receive counselling as parents, he was, in their opinion the very lowest end of the autistic spectrum, there is no way they could say that today although he remains severe I have definitely come across more severe children in recent years particularly those who I knew to be the same as him in the early years.

has his own diet specific to his intolerance' s, and is on supplements that address the issues we now know are problems. Maybe you need to take a small break and re-start from the beginning keeping a food diary, rotating exclusions to try to pinpoint specific problems remember some diets allow things which your child may not tolerate, and add in supplements one at a time in order to see what works and what may actually be making things worse.

Good luck

Vicky

[Guest guest]

Hi,

My daughter is now 14 yrs old. Up until the age of 8 yrs we struggled to get any

food into her, it could take up to 90 minutes for her to eat 10 small mouthfulls

of food. We also struggled with behaviours, sleep and getting her to learn

anything. We had tried supplements and GF /CF diet.

When she was 8 yrs old I started her on the introductory diet of SCD, really

she was just eating chicken pancakes. After about 4 days she ran into the house

and pulled the leg off a chicken that had just come out of the oven and ate it.

My husband and I were amazed. Since that day she has eaten well. It really

seemed like a miracle to us !!.

Just sharing this ,as it was so huge for us and I really didn't think she would

ever eat. Bowel clearouts have also helped with sleep and behaviours. Most of

the time she has good stools everyday but i think her bowel is saggy and so it

fills up ,she benefits from a clearout about once every 2 weeks. Slippery elm 3

x a day has also been very soothing for her.

I hope things start to improve for your children and your family as this is an

enormous strain.

best wishes ,

Sharon x

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > hie all

> >  

> > I just need to say this i am at a point where i am losing hope. you see my

childs case is a big puzzle that noone seems to have a clue and all the

interventions we have tried do not work. Lets see we have tried the following:

> > DMG, TMG, Super Nuthera Multi vitamins, Vitamin B6, Magnesium, Gluthathione,

Bright spark, Focus fomula, Epsom salts, Otomotetine, Lamotrigine, Melatonin,

Gluten and dairy free diet etc but sadly my child has not responded to any of

these. She has gotten worse in terms of hyperactivity, not sleeping and

behaviour in the last 2 years...her school cannot cope with her, we cannot get

any investigations done on her - eeg, mri scans, blood tests - as she fights

people off its almost unbelievable and sounds like i am exaggerating but my

child has got to be the worst case around. It breaks my heart that noone can

help her...I almost dont see the need in continuing on this forum..dont get me

wrong it is very very useful , informative and the support and advice is amazing

, most of the things we have tried we found out about here. I wonder if my

daughter is just not only autistic but very very complex....the thing is we have

not come across a case similar to

> > hers...the sleepless nights, bad reports from schoo,, etc....i m sorry

> >

>

[Guest guest]

Hi,

My daughter is now 14 yrs old. Up until the age of 8 yrs we struggled to get any

food into her, it could take up to 90 minutes for her to eat 10 small mouthfulls

of food. We also struggled with behaviours, sleep and getting her to learn

anything. We had tried supplements and GF /CF diet.

When she was 8 yrs old I started her on the introductory diet of SCD, really

she was just eating chicken pancakes. After about 4 days she ran into the house

and pulled the leg off a chicken that had just come out of the oven and ate it.

My husband and I were amazed. Since that day she has eaten well. It really

seemed like a miracle to us !!.

Just sharing this ,as it was so huge for us and I really didn't think she would

ever eat. Bowel clearouts have also helped with sleep and behaviours. Most of

the time she has good stools everyday but i think her bowel is saggy and so it

fills up ,she benefits from a clearout about once every 2 weeks. Slippery elm 3

x a day has also been very soothing for her.

I hope things start to improve for your children and your family as this is an

enormous strain.

best wishes ,

Sharon x

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > hie all

> >  

> > I just need to say this i am at a point where i am losing hope. you see my

childs case is a big puzzle that noone seems to have a clue and all the

interventions we have tried do not work. Lets see we have tried the following:

> > DMG, TMG, Super Nuthera Multi vitamins, Vitamin B6, Magnesium, Gluthathione,

Bright spark, Focus fomula, Epsom salts, Otomotetine, Lamotrigine, Melatonin,

Gluten and dairy free diet etc but sadly my child has not responded to any of

these. She has gotten worse in terms of hyperactivity, not sleeping and

behaviour in the last 2 years...her school cannot cope with her, we cannot get

any investigations done on her - eeg, mri scans, blood tests - as she fights

people off its almost unbelievable and sounds like i am exaggerating but my

child has got to be the worst case around. It breaks my heart that noone can

help her...I almost dont see the need in continuing on this forum..dont get me

wrong it is very very useful , informative and the support and advice is amazing

, most of the things we have tried we found out about here. I wonder if my

daughter is just not only autistic but very very complex....the thing is we have

not come across a case similar to

> > hers...the sleepless nights, bad reports from schoo,, etc....i m sorry

> >

>