Latest Funding News For

[Guest guest]

Oh Vicky sounds good and bad, hope u ok will email u tomoro honey saend me ur adress have lost it. Luv caroline

xxx

[Guest guest]

In a message dated 28/03/2006 18:40:19 GMT Daylight Time, MaddiganV@... writes:

They also require all clinical proof that chelation and supplementation work across the board for children with autism.They seem to accept heavy metal toxicity as an issue but query the treaments we are all using and want hard evidence, time scales and costings.

>>>There is no clinical proof and its irrelavnt to the treatmetn of the individual child in question. Why should it have to work everybody to work with your child? They are askign for the impossioble because they know you don;t have it...................

Mandi x

[Guest guest]

Hopefully Mandi this is where Downing comes in useful, if I heard "speaking as a clinician" once today I heard it a hundred times, I really need him to point out the relevence of individual childs improvements and he really does have an enormous amount of contempt for mainstream Doctors and their tests, can diss eye to eye on validity of tests which I as a mere mum can't.

As for the timescale they were sending a letter out to Dr Downing straight away, s paed is the most likely to hold things up but as soon as we can see her, get the tests done and back again they will give me an answer, I'm hopeful she will try and arrange a quick appointment.

I think what they do is try and make the whole process as awkward as possible in the hope that I will just give up, but that isn't going to happen.

The medical records department are sending me a form for release of s records, £50 and 40 days max apparently, still intend coming at them from this angle also, apart from looking at all the antibiotics he was prescribed and for so long I'm also interested in how old he was exactly when he had his mercury jabs lol, as he was 3 months premmie, I just want to assure them really that hell will freeze over before I take no for an answer, they will pay one way or another.

Thanks all of you for all your support it means so much and is completely invaluable.

Vicky

xx

[Guest guest]

oH Vicky am sure ur head is whirling but it sounds sooo good. I really hope this goes well 4 u and all of us 2 honey well done

lotsa love caroline

xxxx

[Guest guest]

Hospital Margaret, and thanks I was wondering that myself, will need both really, next question is will they be looking for £50 also?

Vicky

xx

[Guest guest]

In a message dated 28/03/2006 20:52:45 GMT Daylight Time, m.collins9@... writes:

The blood lead level will almost certainly not be high enough for them to agree to chelation for that reason - I think it has to be above 25mcg/dl, even 40mcg/dl and above for them to agree that. if it is that high then the child is still being poisoned now and steps must be taken to clean up the home: especially old woodwork and soil around the house.Also old carpets which can be saturated with old lead paint dust. The sort of chelation that is used for acute lead poisoning is high dose and very short term - enough to get blood levels down, but not to get stored lead out. It is established that there is a rebound in the blood lead level after such short term chelation is stopped. Also the only studies of such short term chelation found that the child's cognitive level did not improve - hardly surprising.

>>>My thoughts exactly - if NHS testing was any good we'd all be fighting for it. You could try the method I was successful in getting high Lead on blood test. I know it means bugger all but they don't. I Have loads of NHS urine Leads - all high but not hgh enough for them to consider it a problem. I think the labs say it has to be over 22?

Mandi x

[Guest guest]

In a message dated 28/03/2006 21:00:26 GMT Daylight Time, MaddiganV@... writes:

Hospital Margaret, and thanks I was wondering that myself, will need both really, next question is will they be looking for £50 also?

>>>They do photocopies in most GP surgeries and chagre by the number or about £10. I have helped others before deciphering Dr writing so let me know if I can help with that - 15 years of dealing with drs I am pretty good at it

Mandi x

[Guest guest]

I don't know what tests they do, but the metals test from biolab came back as very high for Silver and Tin, but mercury was actually low, I'm sure you all already know Silver, tin and mercury are what make up an amalgam filling, I spent most of s pregnancy in the dentists chair!

On the subject of metals I had a few dental X Ray's at that time also, they used a lead apron as I was pregnant, I suppose that would have been O.K. or not? anyone know?

Vicky

xx

[Guest guest]

Thanks Mandi, I'm sure I'll take advantage of that offer.

Vicky

xx

[Guest guest]

In a message dated 28/03/2006 21:13:25 GMT Daylight Time, MaddiganV@... writes:

On the subject of metals I had a few dental X Ray's at that time also, they used a lead apron as I was pregnant, I suppose that would have been O.K. or not? anyone know?

The lead apron was fione but we never ever ever did denatll xrays for anybody that was prergnant in 10 years of dental nursing. It would only be done in life threatening situation. You should not have been xrayed at all..................

Mandi x

[Guest guest]

Well not a yes but neither a no, the situation is this with my PCT,

they now say they want information from Dr Downing, but not

individual information, across the board information on what his

treatment is exactly and clinical proof that it works in children

with autism!!!!

My evidence not good enough, I have spoken to Dr Downing's office

and they say not a problem, anyone who has met him will know how dry

and cutting he can be so for once this may be useful.

They also want the paed not to just give her support based on

observations and knowledge of but again across the board as a

treatment for children with autism, they want her if she feels it's

relevent to order a toxic metal test, apparently they contract this

work out and if she so wishes she can order it, I would imagine she

would do this, the test we have already had done is not considered

evidence because we ordered it ourselves!!!!

They also require all clinical proof that chelation and

supplementation work across the board for children with autism.

They seem to accept heavy metal toxicity as an issue but query the

treaments we are all using and want hard evidence, time scales and

costings.

When all this is done I will get my answer, so individual childs

health is totally irrelevent, they were very eager to know if other

PCT's are funding and felt this would lend weight to the treatment

being accepted for , so there is no argument about mercury as

such but they do not like self referel to private DR's as the test is

available should the doctors feel it is necessary.

If after all this they decide not to fund then they have to give a

good reason why?

By the way RF consultants support was also dismissed as he didn't

give them hard facts on outcomes of chelation and supplementation

with autistic children in general.

Vicky

xx

[Guest guest]

Don't know if you have read the recent DAN concensus paper on chelation. It is on ARI's home page. It is excellent and maybe something worth passing on to your doctor. I always make the comparison to lead or arsenic poisoning. Children are immediately chelated in ERs with either. No one deems the treatment controversal. Good Luck. veronicamadigan <MaddiganV@...> wrote: Well not a yes but neither a no, the situation is this with my PCT, they now say they want information from Dr Downing, but not individual information, across the board information on what his treatment is exactly and clinical proof that it works in children with autism!!!! My evidence not good enough, I have spoken to Dr Downing's office and they say not a problem, anyone who has met him will know how

dry and cutting he can be so for once this may be useful.They also want the paed not to just give her support based on observations and knowledge of but again across the board as a treatment for children with autism, they want her if she feels it's relevent to order a toxic metal test, apparently they contract this work out and if she so wishes she can order it, I would imagine she would do this, the test we have already had done is not considered evidence because we ordered it ourselves!!!!They also require all clinical proof that chelation and supplementation work across the board for children with autism.They seem to accept heavy metal toxicity as an issue but query the treaments we are all using and want hard evidence, time scales and costings.When all this is done I will get my answer, so individual childs health is totally irrelevent, they were very eager to know if other PCT's are funding and felt this

would lend weight to the treatment being accepted for , so there is no argument about mercury as such but they do not like self referel to private DR's as the test is available should the doctors feel it is necessary.If after all this they decide not to fund then they have to give a good reason why?By the way RF consultants support was also dismissed as he didn't give them hard facts on outcomes of chelation and supplementation with autistic children in general.Vickyxx Beauvais Mom to , who had 276X the EPA allowable amount of Mercury in his infant vaccines. ASD_solutions @

groups Helping a generation of Mercury damaged children recover, one step at a time. There is Hope. www.generationrescue.org

Messenger with Voice. PC-to-Phone calls for ridiculously low rates.

[Guest guest]

Go Vicky Go!!

This is great news.....have they given you a timescale?

I think your key here may be to go down the toxic metals route. It

looks like they are not querying that since they are asking your Paed

to order a toxic metals test.

The important thing here imho is that, REGARDLESS of the diagnosis of

autism - your child has heavy metal toxicity. You do not have to

prove a link between autism and metals, you merely show that he is

toxic (which you have done - and OK they want the test repeating by a

doc...no probs). They know that heavy metal toxicity can be treated

and would be hard pressed to deny him this treatment because chelation

for metal toxicity has been around for years and treatment has been

medically approved.

I think you might have more trouble with 'clinical proof that Dr D's

treatment (DAN! protocol) works in children with autism'. What they

are probably looking for here is randomised controlled

trials....unfortunately they dont exist for the whole protocol at the

mo, although there there is some good evidence for parts of the

protocol eg RCT's into gf/cf diets and fish oils.

However, that shouldnt stop you from presenting all the evidence you

can....you have nothing to lose (and incidentally I hope I'm wrong

about them wanting RCT evidence).

Right, what can we do to help?

Zoe x

>

> Well not a yes but neither a no, the situation is this with my PCT,

> they now say they want information from Dr Downing, but not

> individual information, across the board information on what his

> treatment is exactly and clinical proof that it works in children

> with autism!!!!

> My evidence not good enough, I have spoken to Dr Downing's office

> and they say not a problem, anyone who has met him will know how dry

> and cutting he can be so for once this may be useful.

> They also want the paed not to just give her support based on

> observations and knowledge of but again across the board as a

> treatment for children with autism, they want her if she feels it's

> relevent to order a toxic metal test, apparently they contract this

> work out and if she so wishes she can order it, I would imagine she

> would do this, the test we have already had done is not considered

> evidence because we ordered it ourselves!!!!

> They also require all clinical proof that chelation and

> supplementation work across the board for children with autism.

> They seem to accept heavy metal toxicity as an issue but query the

> treaments we are all using and want hard evidence, time scales and

> costings.

> When all this is done I will get my answer, so individual childs

> health is totally irrelevent, they were very eager to know if other

> PCT's are funding and felt this would lend weight to the treatment

> being accepted for , so there is no argument about mercury as

> such but they do not like self referel to private DR's as the test is

> available should the doctors feel it is necessary.

> If after all this they decide not to fund then they have to give a

> good reason why?

> By the way RF consultants support was also dismissed as he didn't

> give them hard facts on outcomes of chelation and supplementation

> with autistic children in general.

> Vicky

> xx

>

[Guest guest]

I think that's the trick. Lead can detected in bood samples. Get a blood test which will surely show high lead and then demand the chelation for the high lead. But then I suppose that's asking too much....

Re: Latest Funding News For

Don't know if you have read the recent DAN concensus paper on chelation.

It is on ARI's home page. It is excellent and maybe something worth passing on to your doctor. I always make the comparison to lead or arsenic poisoning. Children are immediately chelated in ERs with either. No one deems the treatment controversal.

Good Luck.

veronicamadigan <MaddiganV@...> wrote:

Well not a yes but neither a no, the situation is this with my PCT, they now say they want information from Dr Downing, but not individual information, across the board information on what his treatment is exactly and clinical proof that it works in children with autism!!!! My evidence not good enough, I have spoken to Dr Downing's office and they say not a problem, anyone who has met him will know how dry and cutting he can be so for once this may be useful.They also want the paed not to just give her support based on observations and knowledge of but again across the board as a treatment for children with autism, they want her if she feels it's relevent to order a toxic metal test, apparently they contract this work out and if she so wishes she can order it, I would imagine she would do this, the test we have already had done is not considered evidence because we ordered it ourselves!!!!They also require all clinical proof that chelation and supplementation work across the board for children with autism.They seem to accept heavy metal toxicity as an issue but query the treaments we are all using and want hard evidence, time scales and costings.When all this is done I will get my answer, so individual childs health is totally irrelevent, they were very eager to know if other PCT's are funding and felt this would lend weight to the treatment being accepted for , so there is no argument about mercury as such but they do not like self referel to private DR's as the test is available should the doctors feel it is necessary.If after all this they decide not to fund then they have to give a good reason why?By the way RF consultants support was also dismissed as he didn't give them hard facts on outcomes of chelation and supplementation with autistic children in general.Vickyxx

Beauvais Mom to , who had 276X the EPA allowable amount of Mercury in his infant vaccines. ASD_solutions @ groups

Helping a generation of Mercury damaged children recover, one step at a time.

There is Hope.

www.generationrescue.org

Messenger with Voice. PC-to-Phone calls for ridiculously low rates.

[Guest guest]

The blood lead level will almost certainly not be high enough for them to agree to chelation for that reason - I think it has to be above 25mcg/dl, even 40mcg/dl and above for them to agree that. if it is that high then the child is still being poisoned now and steps must be taken to clean up the home: especially old woodwork and soil around the house.Also old carpets which can be saturated with old lead paint dust. The sort of chelation that is used for acute lead poisoning is high dose and very short term - enough to get blood levels down, but not to get stored lead out. It is established that there is a rebound in the blood lead level after such short term chelation is stopped. Also the only studies of such short term chelation found that the child's cognitive level did not improve - hardly surprising.

Margaret

Re: Latest Funding News For

Don't know if you have read the recent DAN concensus paper on chelation.

It is on ARI's home page. It is excellent and maybe something worth passing on to your doctor. I always make the comparison to lead or arsenic poisoning. Children are immediately chelated in ERs with either. No one deems the treatment controversal.

Good Luck.

veronicamadigan <MaddiganV@...> wrote:

Well not a yes but neither a no, the situation is this with my PCT, they now say they want information from Dr Downing, but not individual information, across the board information on what his treatment is exactly and clinical proof that it works in children with autism!!!! My evidence not good enough, I have spoken to Dr Downing's office and they say not a problem, anyone who has met him will know how dry and cutting he can be so for once this may be useful.They also want the paed not to just give her support based on observations and knowledge of but again across the board as a treatment for children with autism, they want her if she feels it's relevent to order a toxic metal test, apparently they contract this work out and if she so wishes she can order it, I would imagine she would do this, the test we have already had done is not considered evidence because we ordered it ourselves!!!!They also require all clinical proof that chelation and supplementation work across the board for children with autism.They seem to accept heavy metal toxicity as an issue but query the treaments we are all using and want hard evidence, time scales and costings.When all this is done I will get my answer, so individual childs health is totally irrelevent, they were very eager to know if other PCT's are funding and felt this would lend weight to the treatment being accepted for , so there is no argument about mercury as such but they do not like self referel to private DR's as the test is available should the doctors feel it is necessary.If after all this they decide not to fund then they have to give a good reason why?By the way RF consultants support was also dismissed as he didn't give them hard facts on outcomes of chelation and supplementation with autistic children in general.Vickyxx

Beauvais Mom to , who had 276X the EPA allowable amount of Mercury in his infant vaccines. ASD_solutions @ groups

Helping a generation of Mercury damaged children recover, one step at a time.

There is Hope.

www.generationrescue.org

Messenger with Voice. PC-to-Phone calls for ridiculously low rates. __________ NOD32 1.1459 (20060327) Information __________This message was checked by NOD32 antivirus system.http://www.eset.com

[Guest guest]

Vicky is this the hospital or the GP records -they will be separate and require two requests.?

Margaret

Re: Latest Funding News For

Hopefully Mandi this is where Downing comes in useful, if I heard "speaking as a clinician" once today I heard it a hundred times, I really need him to point out the relevence of individual childs improvements and he really does have an enormous amount of contempt for mainstream Doctors and their tests, can diss eye to eye on validity of tests which I as a mere mum can't.

As for the timescale they were sending a letter out to Dr Downing straight away, s paed is the most likely to hold things up but as soon as we can see her, get the tests done and back again they will give me an answer, I'm hopeful she will try and arrange a quick appointment.

I think what they do is try and make the whole process as awkward as possible in the hope that I will just give up, but that isn't going to happen.

The medical records department are sending me a form for release of s records, £50 and 40 days max apparently, still intend coming at them from this angle also, apart from looking at all the antibiotics he was prescribed and for so long I'm also interested in how old he was exactly when he had his mercury jabs lol, as he was 3 months premmie, I just want to assure them really that hell will freeze over before I take no for an answer, they will pay one way or another.

Thanks all of you for all your support it means so much and is completely invaluable.

Vicky

xx__________ NOD32 1.1459 (20060327) Information __________This message was checked by NOD32 antivirus system.http://www.eset.com

[Guest guest]

They shouldn't ask for that much if the file is small - the charge should be reasonable photocopying costs. The max. should only be charged for large files. I think you are allowed to read the original file if a written request was made.

Incidentally, I've heard lawyers say that info requested from LEAs, PCTs, social services etc under the Freedom of Information Act not uncommonly come pre-weeded of anything the holder thinks might be embarrassing, but if you go for more than one source you can often find the missing bits. (Pre-weeding is illegal , of course.)

Margaret

Re: Latest Funding News For

Hospital Margaret, and thanks I was wondering that myself, will need both really, next question is will they be looking for £50 also?

Vicky

xx__________ NOD32 1.1459 (20060327) Information __________This message was checked by NOD32 antivirus system.http://www.eset.com

[Guest guest]

Not sure what level they consider needs action, but I know our GP didn't even know what the paediatric reference level was (it's much less than the adult one) so failed to notice H was lead poisoned.

Margaret

Re: Latest Funding News For

In a message dated 28/03/2006 20:52:45 GMT Daylight Time, m.collins9@... writes:

The blood lead level will almost certainly not be high enough for them to agree to chelation for that reason - I think it has to be above 25mcg/dl, even 40mcg/dl and above for them to agree that. if it is that high then the child is still being poisoned now and steps must be taken to clean up the home: especially old woodwork and soil around the house.Also old carpets which can be saturated with old lead paint dust. The sort of chelation that is used for acute lead poisoning is high dose and very short term - enough to get blood levels down, but not to get stored lead out. It is established that there is a rebound in the blood lead level after such short term chelation is stopped. Also the only studies of such short term chelation found that the child's cognitive level did not improve - hardly surprising.

>>>My thoughts exactly - if NHS testing was any good we'd all be fighting for it. You could try the method I was successful in getting high Lead on blood test. I know it means bugger all but they don't. I Have loads of NHS urine Leads - all high but not hgh enough for them to consider it a problem. I think the labs say it has to be over 22?

Mandi x__________ NOD32 1.1459 (20060327) Information __________This message was checked by NOD32 antivirus system.http://www.eset.com

[Guest guest]

We have just come back from Bradstreet's clinic and a bot ther had a

lead level of 290 - it should be below 5! they are Dutch and took

this to their dr who did a blood test and did not find he had high

lead levels. Apparently lead goes into the bones so every time a kid

grows more lead is released into their bodies which needs to be

chelated.

Charlie has toxic lead levels which means we will have to chelate

for longer. Also I believe that lead masks the true level of mercury

poisoning and has to be removed before you know how mercury toxic

they are. Just another little joy in the ups and downs of treating

an autistic child!

Peta-

-- In Autism Treatment , " Margaret "

<m.collins9@...> wrote:

>

> The blood lead level will almost certainly not be high enough for

them to agree to chelation for that reason - I think it has to be

above 25mcg/dl, even 40mcg/dl and above for them to agree that. if

it is that high then the child is still being poisoned now and steps

must be taken to clean up the home: especially old woodwork and soil

around the house.Also old carpets which can be saturated with old

lead paint dust. The sort of chelation that is used for acute lead

poisoning is high dose and very short term - enough to get blood

levels down, but not to get stored lead out. It is established that

there is a rebound in the blood lead level after such short term

chelation is stopped. Also the only studies of such short term

chelation found that the child's cognitive level did not improve -

hardly surprising.

> Margaret

> Re: Latest Funding News

For

>

>

> Don't know if you have read the recent DAN concensus paper on

chelation.

> It is on ARI's home page. It is excellent and maybe something

worth passing on to your doctor. I always make the comparison to

lead or arsenic poisoning. Children are immediately chelated in ERs

with either. No one deems the treatment controversal.

> Good Luck.

>

>

> veronicamadigan <MaddiganV@...> wrote:

> Well not a yes but neither a no, the situation is this with

my PCT,

> they now say they want information from Dr Downing, but not

> individual information, across the board information on what

his

> treatment is exactly and clinical proof that it works in

children

> with autism!!!!

> My evidence not good enough, I have spoken to Dr Downing's

office

> and they say not a problem, anyone who has met him will know

how dry

> and cutting he can be so for once this may be useful.

> They also want the paed not to just give her support based

on

> observations and knowledge of but again across the

board as a

> treatment for children with autism, they want her if she

feels it's

> relevent to order a toxic metal test, apparently they

contract this

> work out and if she so wishes she can order it, I would

imagine she

> would do this, the test we have already had done is not

considered

> evidence because we ordered it ourselves!!!!

> They also require all clinical proof that chelation and

> supplementation work across the board for children with

autism.

> They seem to accept heavy metal toxicity as an issue but

query the

> treaments we are all using and want hard evidence, time

scales and

> costings.

> When all this is done I will get my answer, so individual

childs

> health is totally irrelevent, they were very eager to know

if other

> PCT's are funding and felt this would lend weight to the

treatment

> being accepted for , so there is no argument about

mercury as

> such but they do not like self referel to private DR's as

the test is

> available should the doctors feel it is necessary.

> If after all this they decide not to fund then they have to

give a

> good reason why?

> By the way RF consultants support was also dismissed as he

didn't

> give them hard facts on outcomes of chelation and

supplementation

> with autistic children in general.

> Vicky

> xx

>

>

>

>

>

>

>

>

>

> Beauvais

> Mom to , who had 276X the EPA allowable amount of

Mercury in his infant vaccines.

> ASD_solutions @ groups

> Helping a generation of Mercury damaged children recover, one

step at a time.

> There is Hope.

> www.generationrescue.org

>

>

>

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

---------

> Messenger with Voice. PC-to-Phone calls for

ridiculously low rates.

>

> 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]

I was xrayed too and had

a filling when I was only a couple of weeks pregnant. I didn’t realise I was

pregnant but I wish they’d asked if it was possible, I would have twigged then!

Sara x

Re:

Latest Funding News For

In a

message dated 28/03/2006 21:13:25 GMT Daylight Time, MaddiganV@... writes:

On the

subject of metals I had a few dental X Ray's at that time also, they used a

lead apron as I was pregnant, I suppose that would have been O.K. or not?

anyone know?

The

lead apron was fione but we never ever ever did denatll xrays for anybody

that was prergnant in 10 years of dental nursing. It would only be done in life

threatening situation. You should not have been xrayed at all..................

Mandi x

--

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[Guest guest]

Jane I was at the dentist almost from the word go with s pregnancy, I have dreadful teeth and the previous pregnancy had left them soo bad, lots of pain and actually having teeth fall out, where other mums lose hair, my hair got thicker but I lost teeth!!!

At the end of the day I was so very naive, and poor has pretty much been exposed to every environmental insult at high levels from day one of pregnancy, I find it very hard these days to let myself off the hook on the basis that I just followed Dr and Dentist advice, from dental work to vaccines, it seems incredible to me in hindsight I was actually that stupid and do feel I must bear some of the burden of guilt for what has happened to .

I had more than one X Ray and it would have been very early in pregnancy.

Vicky

xx

[Guest guest]

Hi Vicky,

We were taken aback by having to pay £50 for medical records from our GP. Especially when the same records cost me £7 when I read them 7 years ago. The hospital tried to charge for their records. We queried this and did not have to pay. I was told that there should be one fee per Trust. Complete rip off if you ask me.

Jane

Re: Latest Funding News For

In a message dated 28/03/2006 21:00:26 GMT Daylight Time, MaddiganV@... writes:

Hospital Margaret, and thanks I was wondering that myself, will need both really, next question is will they be looking for £50 also?

>>>They do photocopies in most GP surgeries and chagre by the number or about £10. I have helped others before deciphering Dr writing so let me know if I can help with that - 15 years of dealing with drs I am pretty good at it

Mandi x

[Guest guest]

I had dental x rays too. I was concerned abou them at them time. How many months pregnant were you when had the xrays?Jane

Re: Latest Funding News For

I don't know what tests they do, but the metals test from biolab came back as very high for Silver and Tin, but mercury was actually low, I'm sure you all already know Silver, tin and mercury are what make up an amalgam filling, I spent most of s pregnancy in the dentists chair!

On the subject of metals I had a few dental X Ray's at that time also, they used a lead apron as I was pregnant, I suppose that would have been O.K. or not? anyone know?

Vicky

xx