Re: Views/opinion - to give Paed/GP copy of Test Results and DAN report

June 4, 2007

Hi

Â

My personal experience is don't waste your time. You will just end up frustrated and upset. My GP doesn't know anything about Eleanor's protocol or her results because I know he would have no interest and wouldn't support me.

Â

There is very little in the protocol that would be available on the NHS anyway, so there is no need to tell them because they can't provide any of it for you. It will all have to be funded by you.

Â

I do insist on blood work when I need it, like you, and I think with previous abnormal results you will have no problem getting them to fill in a blood form for you. They will probably do this over the phone and leaveÂ the formÂ at the desk for you to collect. You can then nip down to Children's out patients and get them to do the draw for you. But that's as far as it goes for me. I always ask the practice manager to fax or copy the results for me so that I can send them to my DAN or whoever.

It's very frustrating and it's wrong, but I find that if I spend time getting upset about the injustice in the system then it takes my focus and energy away from the real issue, i.e. healing my daughter.

HTH,

Joy

Views/opinion - to give Paed/GP copy of Test Results and DAN report

Hi Everyone,

Please I need your your views/experiences about giving paediatricians

/GP's the Report from a DAN and the results from poryphrin, amino acids,

and OAT tests. Have you all provided your NHS docs with the results of

the tests you've done?

What about the proposed treatment - I get the feeling that this may not

be a good idea (especially with B12 treatment and chelation). Is it

"the less they know, the better" and a BIG risk if we inform them of

everything?

Our DAN has given us a letter to give our paediatrician requesting for

her support with further tests (bloods) for liver function and kidney

function as they (NHS) did some bloods a little while ago and some of

ds's liver function tests were not in normal range. Then the elevated

levels of urinary oxalate marker with an elevated urinary creatinine

level and the NHS' recent finding of protein in a recent urine test

which could be all attributed to kidney dysfunction and a probable side

effect of the medical diet for his epilepsy. The letter also draws

attention to the moderate to high level nutritional deficiencies in

particular with the amino acids which are affected and can be again, by

the restrictive ketogenic diet. Soooo... what do you think our

chances of getting their support with these?

I would really appreciate your thoughts, advice on this pleeeeasse.

thanks,

emily

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June 4, 2007

Have to agree with that, we dont bother telling the doc's anything

and in fact let our paed go, we dont use him anymore when he

suggested drugs for my 3 year old!

Further, we have had more than enough bloods and urine taken via NHS

which to an observant eye, would show that our boy has some major

problems, and even when the results come back with an exclamation

mark next to them, from the lab, they do nothing. The simply dont

want to know and they sure dont want you telling them.

If you can get bloods and other tests done for free, by all means,

but make sure you dont tell them why you need them, e.g. chelation,

etc. Tell them you feel your child is anaemic or some other story

before you tell them the real story. Best case scenario is that they

will do the bloods and show a modicum of interest. Worst case

scenario is you get accused of child abuse for taking " unecessary

bloods " like what was intimated to me about our boy/tests.

Even those docs who want to help are scared of setting a precedent,

particularly with doctors being struck off or scrutinised regularly.

They arent willing to jeapardise their careers over our kids. Which

is why we have to be so vigilant and informed.

>

> Hi

>

> My personal experience is don't waste your time. You will just end

up frustrated and upset. My GP doesn't know anything about Eleanor's

protocol or her results because I know he would have no interest and

wouldn't support me.

>

> There is very little in the protocol that would be available on

the NHS anyway, so there is no need to tell them because they can't

provide any of it for you. It will all have to be funded by you.

>

> I do insist on blood work when I need it, like you, and I think

with previous abnormal results you will have no problem getting them

to fill in a blood form for you. They will probably do this over the

phone and leaveÂ the formÂ at the desk for you to collect. You can

then nip down to Children's out patients and get them to do the draw

for you. But that's as far as it goes for me. I always ask the

practice manager to fax or copy the results for me so that I can

send them to my DAN or whoever.

>

> It's very frustrating and it's wrong, but I find that if I spend

time getting upset about the injustice in the system then it takes

my focus and energy away from the real issue, i.e. healing my

daughter.

>

> HTH,

> Joy

>

> Views/opinion - to give

Paed/GP copy of Test Results and DAN report

>

> Hi Everyone,

>

> Please I need your your views/experiences about giving

paediatricians

> /GP's the Report from a DAN and the results from poryphrin, amino

acids,

> and OAT tests. Have you all provided your NHS docs with the

results of

> the tests you've done?

>

> What about the proposed treatment - I get the feeling that this

may not

> be a good idea (especially with B12 treatment and chelation). Is it

> " the less they know, the better " and a BIG risk if we inform them

of

> everything?

>

> Our DAN has given us a letter to give our paediatrician requesting

for

> her support with further tests (bloods) for liver function and

kidney

> function as they (NHS) did some bloods a little while ago and some

of

> ds's liver function tests were not in normal range. Then the

elevated

> levels of urinary oxalate marker with an elevated urinary

creatinine

> level and the NHS' recent finding of protein in a recent urine test

> which could be all attributed to kidney dysfunction and a probable

side

> effect of the medical diet for his epilepsy. The letter also draws

> attention to the moderate to high level nutritional deficiencies in

> particular with the amino acids which are affected and can be

again, by

> the restrictive ketogenic diet. Soooo... what do you think our

> chances of getting their support with these?

>

> I would really appreciate your thoughts, advice on this pleeeeasse.

>

> thanks,

>

> emily

>

_____________________________________________________________________

___

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>

June 4, 2007

On the other hand if you can do it without upsetting yourself, you may

perform a public education service -- like vicky

xx Sally

joymroscoe@... wrote:

>

> Hi

>

> My personal experience is don't waste your time. You will just end up

> frustrated and upset. My GP doesn't know anything about Eleanor's

> protocol or her results because I know he would have no interest and

> wouldn't support me.

>

> There is very little in the protocol that would be available on the

> NHS anyway, so there is no need to tell them because they can't

> provide any of it for you. It will all have to be funded by you.

>

> I do insist on blood work when I need it, like you, and I think with

> previous abnormal results you will have no problem getting them to

> fill in a blood form for you. They will probably do this over the

> phone and leave the form at the desk for you to collect. You can then

> nip down to Children's out patients and get them to do the draw for

> you. But that's as far as it goes for me. I always ask the practice

> manager to fax or copy the results for me so that I can send them to

> my DAN or whoever.

>

> It's very frustrating and it's wrong, but I find that if I spend time

> getting upset about the injustice in the system then it takes my focus

> and energy away from the real issue, i.e. healing my daughter.

>

> HTH,

> Joy

>

> [Autism-Biomedical- Europe] Views/opinion - to give Paed/GP

> copy of Test Results and DAN report

>

> Hi Everyone,

>

> Please I need your your views/experiences about giving paediatricians

> /GP's the Report from a DAN and the results from poryphrin, amino acids,

> and OAT tests. Have you all provided your NHS docs with the results of

> the tests you've done?

>

> What about the proposed treatment - I get the feeling that this may not

> be a good idea (especially with B12 treatment and chelation). Is it

> " the less they know, the better " and a BIG risk if we inform them of

> everything?

>

> Our DAN has given us a letter to give our paediatrician requesting for

> her support with further tests (bloods) for liver function and kidney

> function as they (NHS) did some bloods a little while ago and some of

> ds's liver function tests were not in normal range. Then the elevated

> levels of urinary oxalate marker with an elevated urinary creatinine

> level and the NHS' recent finding of protein in a recent urine test

> which could be all attributed to kidney dysfunction and a probable side

> effect of the medical diet for his epilepsy. The letter also draws

> attention to the moderate to high level nutritional deficiencies in

> particular with the amino acids which are affected and can be again, by

> the restrictive ketogenic diet. Soooo... what do you think our

> chances of getting their support with these?

>

> I would really appreciate your thoughts, advice on this pleeeeasse.

>

> thanks,

>

> emily

>

> Get a FREE AOL Email account with 2GB of storage. Plus, share and

> store photos and experience exclusively recorded live music Sessions

> from your favourite artists. Click Here

> <http://info.aol.co.uk/joinnow/?ncid=548> for more information.

>

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

>

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12:47

>

June 4, 2007

I've always copied everything to Paed and GP. And the NHS still

stumps up for a lot of testing for Tom including recent calprothingy

test. Our paed is pretty much opposed to biomed but my view is that

it's a significant factor in Tom's well being, TOm's her patient and

therefore she is obliged to know all about it.

We consulted her before we started chelation - she said she wouldn't

recommend it but couldn't see how it was harmful.

In part we want the powers that be to know what we're doing so they

can't kick up but I appreciate that that won't work for all paeds. I

just feel easier being honest with everyone, it's not as if we're

following quack theories, DAN Is pretty established whether you

subscribe to it or not.

Our GP finally authorised HBOT one full year after we first asked him!

Steph x