Re: Funding, help needed, urgently

[Guest guest]

Dear Vicky

Before I start on this I cant find your address please send to me again. The Listening Programme all packed and ready to post..

I would disagree about the not too scientific bit. You are not expected to be a scientist, they are, and should be able to interpret what you provide for them. I would have alist of what you want and then some science to back up the rational behind each item eg a list of websites, some articles etc. I was also thinking about some of the DVDs from was it Autism One and there lotsa good info on the TA website.

I will be happy to send you some of this stuff if you need it.

Email me offline if you prefer.

You might not one to go down this route but that would be my way to handle it.

JMHO and whatever you decide I'll be thinking of ya.

Lotsa love

Caroline

xxx

[Guest guest]

Caroline, Natasa, many thanks, the issue here seems to be their doubt that biomedical caused the improvements we are seeing in , I have them over a barrel on many points but could do with something to really nail it, do you know of any studies on early exposure to antibiotics, food intolerances etc, coming at it from a gut/brain angle.

TIA

Vicky

xx

[Guest guest]

Vicky

I dont have time right now but was thinking I could go onto the Manchester Uni computer eg Medline maybe on Sunday and see if I can find some stuff. Did you get the papers I sent you? The one Natasa recommended is there...

I am thinking about the dysbiosis studies done at Southhampton or somewhere that show the change of bowel flora in kids with autism or do you have the stuff on opioid excess theory from paul shattock.

Describe to me in a few sentences what you need to find again and I will use those for my search words when I get onto the site.

I would also email the Autism Research Institute and maybe ANDI, any organisations that might have a database of papers.

I'm going to get back to you tomorrow and I'll try and read thru these papers too and jot some stuff down...

What do you mean by you have them over a barrel on some things? What do your test results show already? What have you tested for?

Send me your address again, I've lost it...

Love Craoline

xxx

Yippee, off out to cinema, sister here to baby sit, oh how excited we get....

[Guest guest]

Vicky, without a doubt I think the paper by Vargas et al " Immunity,

Neuroglia and Neuroinflammation " that has shown neurological infammation

in autistic subject proves that there is something going on on

biological front, something besides genes and psycology is involved.

I can forward the pdf (what is your email) of go to

Autism-Immune/ (you have to join)

the pdf file of the article has just been added to the files there.

Best of luck!

Natasa

>

> Following the shenanigans of earlier this week, the phone has been

> ringing off the hook from PCT, furiously back peddling on the letter

> from Royal Free, paed is livid she was misrepresented.

> Anyway they have set up a meeting for this coming Tuesday for me to

put

> my case forward face to face with the panel, very short notice and the

> school strike day.

> I have paed and RF backing but as this would appear to be my best and

> final chance to make the case I would like to ask you all apart from

> s individual stuff what else would be the most irefutable evidence

> out there for biomed that I can lay my hands on, not too lengthy and

> not overly scientific as they more than likely will be prepared to eat

> me for breakfast on the science front.

> Really would appreciate some feedback.

> TIA

> Vicky

> xx

>

[Guest guest]

In a message dated 24/03/2006 18:40:58 GMT Standard Time, CarolineTraa@... writes:

I am thinking about the dysbiosis studies done at Southhampton or somewhere that show the change of bowel flora in kids with autism or do you have the stuff on opioid excess theory from paul shattock.

That was Reading Prof Gibson

Mandi x

[Guest guest]

There was a post a week or so ago, think it had New Thinking on

Neurodevelopment in the subject title, could be what you are after.

Hope.

Natasa

>

> Caroline, Natasa, many thanks, the issue here seems to be their doubt

that

> biomedical caused the improvements we are seeing in , I have them

over a

> barrel on many points but could do with something to really nail it,

do you

> know of any studies on early exposure to antibiotics, food

intolerances etc,

> coming at it from a gut/brain angle.

> TIA

> Vicky

> xx

>

[Guest guest]

Will look for that Natasa, thanks, I am normally a bit more organized than this, but I also have a meeting on Thursday with LEA, challenging s amended statement and SLT input, so I had been putting all my energy into that, this is very short notice.

Thanks very much

Vicky

xx

[Guest guest]

Thanks Caroline, somewhere I have Shattocks stuff, will have to spend all weekend digging through, you know the last time I spoke to Shattock he kind of said the doctors did the right thing in all the antibiotic prescribing for , and was pretty shocked to hear hadn't been given MMR with his gut issues.

What I'm looking for and someone here may know of it, was research relating to Candida and antibiotics where they made a connection between increase in autism and widespread use of antibiotics in young children????

Course I believe that is only half the story as it was a milk intolerance that caused the ear infections for which the antibiotics were prescribed, and the damage was really done earlier on with thimerasol, but I need to show the huge regression from antibiotics and now improvements from gut healing, have to start somewhere, and as has been in their gastro dept for yrs with dreadful diahrea and lack of growth before biomed and now has normal BM it seems the best place to start.

To put it simply what I need is everything I already know in a formal study, with s improvements, paeds observations and support and RF support.

Thanks for your trouble Caroline.

Vicky

xx

[Guest guest]

Thanks Tina, yes please.

Vicky

xx

[Guest guest]

That would be brilliant gillian, I am starting to feel optimistic about Tuesday.

Thanks

Vicky

xx

[Guest guest]

Oh that is just too good joanne, imagine being able to throw their own stuff back at them, it really doesen't get any better than that lol.

I will be at the G.P. first thing Mon morning rifling through the leaflets.

Good Luck with your application, any idea when Mandi is going?

If just one of us could get this funding it would be such a breakthrough.

Vicky

xx

[Guest guest]

Someone did do a study about a link between early exposure to antibiotics

and autism. I printed it off this site. I'll hunt the house for it later and

get back to you Vicky.

Gillian.

On 24/3/06 17:57, " natasa778 " <neno@...> wrote:

> There was a post a week or so ago, think it had New Thinking on

> Neurodevelopment in the subject title, could be what you are after.

> Hope.

>

> Natasa

>

>

>

>>

>> Caroline, Natasa, many thanks, the issue here seems to be their doubt

> that

>> biomedical caused the improvements we are seeing in , I have them

> over a

>> barrel on many points but could do with something to really nail it,

> do you

>> know of any studies on early exposure to antibiotics, food

> intolerances etc,

>> coming at it from a gut/brain angle.

>> TIA

>> Vicky

>> xx

>>

>

>

>

>

>

>

> 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]

Hi Vicky I have a list of abstacts of various papers, about 40 of them which I thought interesting. I can send it to you offlist if you like. Tinaveronicamadigan <MaddiganV@...> wrote: Following the shenanigans of earlier this week, the phone has been ringing off the hook from PCT, furiously back peddling on the letter from Royal Free, paed is livid she was misrepresented.Anyway they have set up a meeting for this coming Tuesday for me to put my case forward face to face with the panel, very short notice and the school strike day.I have paed and RF backing but as this would appear to be my best and final chance to make the case I would like to ask you all apart from s individual stuff what else would be the most irefutable evidence out

there for biomed that I can lay my hands on, not too lengthy and not overly scientific as they more than likely will be prepared to eat me for breakfast on the science front.Really would appreciate some feedback.TIAVickyxxDISCLAIMERNo 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 have just joined this group and have come in half way through this

thread, but if whoever wants medical autism research stuff, try looking

at http://members.jorsm.com/~binstock/index.htm There is an awful

lot there.

Miles

CarolineTraa@... wrote:

> Vicky

> I dont have time right now but was thinking I could go onto the

> Manchester Uni computer eg Medline maybe on Sunday and see if I can

> find some stuff. Did you get the papers I sent you? The one Natasa

> recommended is there...

> I am thinking about the dysbiosis studies done at Southhampton or

> somewhere that show the change of bowel flora in kids with autism or

> do you have the stuff on opioid excess theory from paul shattock.

> Describe to me in a few sentences what you need to find again and I

> will use those for my search words when I get onto the site.

> I would also email the Autism Research Institute and maybe ANDI, any

> organisations that might have a database of papers.

> I'm going to get back to you tomorrow and I'll try and read thru these

> papers too and jot some stuff down...

> What do you mean by you have them over a barrel on some things? What

> do your test results show already? What have you tested for?

> Send me your address again, I've lost it...

> Love Craoline

> xxx

> Yippee, off out to cinema, sister here to baby sit, oh how excited we

> get....

>

>

> 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]

See if these could be of use:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=pubmed & dop\

t=Abstract & list_uids=12010627 & query_hl=30 & itool=pubmed_docsum

http://www.pubmedcentral.gov/articlerender.fcgi?tool=pubmed & pubmedid=115\

69621

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=pubmed & dop\

t=Abstract & list_uids=16264412 & query_hl=30 & itool=pubmed_DocSum

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=pubmed & dop\

t=Abstract & list_uids=15741748 & query_hl=30 & itool=pubmed_DocSum

p.s. many good ones by Wakefield but you probably don't want to go

there...

Natasa

> >

> > Caroline, Natasa, many thanks, the issue here seems to be their

doubt

> that

> > biomedical caused the improvements we are seeing in , I have

them

> over a

> > barrel on many points but could do with something to really nail it,

> do you

> > know of any studies on early exposure to antibiotics, food

> intolerances etc,

> > coming at it from a gut/brain angle.

> > TIA

> > Vicky

> > xx

> >

>

[Guest guest]

Hi Vicky

In my local GP's there is a leaflet about antibiotics.

Its one of those that says antibiotics are no good for colds etc..

AND

Antibiotics can give you Thrush...

There you go then then dig themselves their own hole ...see if your

GP has one...its yellow.

AND

The new Vaccination leaflet came trying to get me to vaccinate my

other son with his boosters - I THINK NOT YOU MORONS !

But in it the MMR bit says - you would give NOT give to an

immunosupressed child.. i.e. child with poor immune system..got you

you ba''ar=s !

and on the thimerasol bit it says about it being withdrawn as a

prescaution - my arse !

I am saving all these great quotes for my PCT meeting vicky.

My latest phone call to them today was to find out when they were

meeting to discuss my appeal.

They said 1st 2 weeks in April hopefully.. which means they are

skint and are waiting for their new budget .

BUT

they said they were having trouble getting people on the panel who

knew about this kind of thing.

I said you will be lucky love ive been waiting for 4 years to find

1 person in the NHS who knows about this let alone a panel.

Thats why I have asked you for extra contractual funding to see an

autism specialist cos you dont have one - I rest my case - ooh bring

them on ..

Joanne

>

> That would be brilliant gillian, I am starting to feel optimistic

about

> Tuesday.

> Thanks

> Vicky

> xx

>

[Guest guest]

Just new it was down south some place lovely

Thanks for this

Caroline

xx