Re: Dr Heard and the challenge test

[Guest guest]

In a message dated 01/11/2006 09:36:20 GMT Standard Time, Moroza-@... writes:

He said he didn’t understand anyone’s objection to it as all it was, was the first dose of DMSA. It’s not a bigger dose or anything and that he’d never had bad reports on it.

>>Depends what you consider a regualr dose. DAN! prorcol would probably have your kid on 100-150mg per dose every 8 hours.

IMHO the safest p[rotocol os the Cutler one, which would likely have him getting 5-10mg every 4 hours. So there is your difference in doseage.

When you give one large dose of chelator you mobilise lots of metals, whether you catch the right pee sample to see them is hit and miss. When you don;t follow up that dose with more chelator - ie the blood levels drops, DMSA has a 4 hour half life, then those massive amounts of metals that have been mobilised, too many to adequately excrete, go pinging around and can settle in a wrose place than where they were at before. Like the brain.

Dr H has a mind block with this - he has heard of this before, he has had his own patients havng a reaction to the challenge but he just isn't getting it. He likes to keep to DAN! protocol so if anybody insurance wise comes after him he is able to point to the protocol he follows. Its published and widely accepted in the ASD community.

JmC and Dr Usman, do 4 hourly dosing, Anju has no issue with folks wanting to do Cutler protocol for instance, JMcC uses frequent dosing for 'younger kids'. They also both give minerals throughout the round, Dr H doesn't because it doesn't say that in the DAN! protocol. We have discussed it many times and agree to disagree. He did admit he had never used any other protocol (except Buttars for TD-DMPS) so he has no experience of Cutler protocol anyways.

You can collect wee for your 'challenge' on your first round - as he says its the same - so why go in with one or two high doses?. IMHO if you start a round on Friday night, first morning AM wee on Saturday shows the most metals with DMSA only when you are just starting out.

You and DH are the ones actually giving the doses so you make up your own mind how often and what dose, after doing your own research which should start here:-

Mercury Detox: Information, Tools, and Resources

HTH, ask again if I make no sense

Mandi just back from annual review, depressed and with head pain grhhhhhhhhhhhhhhhhh

[Guest guest]

We saw Dr Heard in September and we done the challenge test and everything went ok. Like Dr H said its not a bigger dose. HTH Sass and Rem <Moroza-@...> wrote: Hello everybody, We took Tom to see Dr Heard for the first time yesterday, after a big 11 month wait. He said Tom should have the challenge test and (already prepared by you kind people) I said I’d heard lots of bad things about it. He said he didn’t understand anyone’s objection to it as all it was, was the first dose of DMSA. It’s not a bigger dose or anything and that he’d never had bad reports on it. He also seemed to be saying there was no other way of chelating, so we said we’d go away and think about it (by which I meant I would go away and ask all of you again). Help please! Sara --Internal Virus Database is out-of-date.Checked by AVG Free Edition.Version: 7.1.408 / Virus Database: 268.13.11/493 - Release Date: 23/10/2006 --No virus found in this outgoing message.Checked by AVG Free Edition.Version: 7.1.409 / Virus Database: 268.13.21/510 - Release Date: 01/11/2006 Send instant messages to your online friends http://uk.messenger.

[Guest guest]

Sara,

What’s he proposing, oral or suppository?

Dr Heard and the challenge test

Hello everybody,

We

took Tom to see Dr Heard for the first time yesterday, after a big 11 month

wait. He said Tom should have the challenge test and (already prepared by you

kind people) I said I’d heard lots of bad things about it. He said he

didn’t understand anyone’s objection to it as all it was, was the first dose of

DMSA. It’s not a bigger dose or anything and that he’d never had bad reports on

it. He also seemed to be saying there was no other way of chelating, so we said

we’d go away and think about it (by which I meant I would go away and ask all

of you again). Help please!

Sara

e-mail provided by Moose Internet Services

http://www.moose.co.uk/

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[Guest guest]

Oooh,

does that make a difference? I think he was offering a choice.

Dr Heard and the challenge test

Hello everybody,

We took

Tom to see Dr Heard for the first time yesterday, after a big 11 month wait. He

said Tom should have the challenge test and (already prepared by you kind

people) I said I’d heard lots of bad things about it. He said he didn’t

understand anyone’s objection to it as all it was, was the first dose of DMSA.

It’s not a bigger dose or anything and that he’d never had bad reports on it. He

also seemed to be saying there was no other way of chelating, so we said we’d

go away and think about it (by which I meant I would go away and ask all of you

again). Help please!

Sara

e-mail provided by Moose

Internet Services

http://www.moose.co.uk/

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[Guest guest]

In a message dated 01/11/2006 20:23:12 GMT Standard Time, Moroza-@... writes:

Oh Mandi, thanks ever so much for this brilliantly explained answer. So where do I get these low dose suppositories? Will Dr H sell them to me or prescribe them? how do I know which minerals to give? I’m going straight to your link when I’ve finished writing this so you may not need to answer that last question. I am going to ask for her opinion too, by the way. I’ve got a feeling that she’s got a different take on it again.

>>No idea on suppositories, I always used oral. Talk to about the TD if you think you have trouble with oral.

Was your annual review terrible? Why?

>>Because they think I am talking out of my backside, rolling their eyes at the brushing even though I called Neurodevelopmental Therapy. They have stupid excuses for everything, as in I made the teachers nervous went I went in and was in the way with my video camera so thats why he didn;t get a single reinforcer or any praise for the whole morning I was there, that sort of thing.

He is NOT getting a differentitaed curriculum and today they tell me he is funded at 100% 1:1 so why the hell has he not got totally differentiated lessons?

They spend too much time with kids with behavioural issues whose parents send them to school on smarties and wotsits, drives me nuts. The IEP is meaningless - well I have that scrapped and they are starting over. They roll their eyes about GM - we'll show them.

Only there 10 mins and the head trots out about if I am not happy he can move schools. I told her the LEA assessed him a braindead so there is no other school so you are stuck with us babe! She suggested home ed - I said I am not doing that without funding and the LEA won't give it, been there done that, dumped the T-shirt.

Well maybe a $25K funded home programme might look more attractive to LEA now if he is on 1:1 which with transport is costing them just under £50K per year. Hmmmmmmmmmmm, I feel a bottle of wine coming on, I already had the Pizza and the Apple Turnovers - yummy!

Mad Manic Mandi

[Guest guest]

Oh Mandi,

thanks ever so much for this brilliantly explained answer. So where do I get

these low dose suppositories? Will Dr H sell them to me or prescribe them? how

do I know which minerals to give? I’m going straight to your link when I’ve

finished writing this so you may not need to answer that last question. I am

going to ask for her opinion too, by the way. I’ve got a feeling

that she’s got a different take on it again.

Was your

annual review terrible? Why?

Lots and

lots of thanks,

Sara

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[Guest guest]

Hi Sara,

We saw Dr H recently. We told him about a huge regression that we had seen in my 12 year old during the summer. At the same time (around round 8 of oral dmsa as prescribed by Dr H - 300mg 8 hoursly, 3 days on a 11 off, without minerals. We also told him about large sores that had appeared just before this regression on my sons nose, around his mouth and on his hands and elbows. We thought at the time that the sore on his nose was a burn (but discounted this when they spread to other parts of his body). His nose was so bad we ended up in A & E. Dr H said he didn't think it could be connected to chelation, and sounded more like a viral infection. We aren't so sure. Immedicately after this we swapped to low, frequent dosing. I discussed the swap during our visit to the Breakspear Hospital. Dr H was fine with it. He said that some of his patients do well on 8 hourly and others do better on more frequent dosing.

Jane

RE: Dr Heard and the challenge test

Oh Mandi, thanks ever so much for this brilliantly explained answer. So where do I get these low dose suppositories? Will Dr H sell them to me or prescribe them? how do I know which minerals to give? I’m going straight to your link when I’ve finished writing this so you may not need to answer that last question. I am going to ask for her opinion too, by the way. I’ve got a feeling that she’s got a different take on it again.

Was your annual review terrible? Why?

Lots and lots of thanks,

Sara

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[Guest guest]



I already had the Pizza and the Apple Turnovers - yummy!

LOL!

Jane

Re: Dr Heard and the challenge test

In a message dated 01/11/2006 20:23:12 GMT Standard Time, Moroza-Tiscali (DOT) co.uk writes:

Oh Mandi, thanks ever so much for this brilliantly explained answer. So where do I get these low dose suppositories? Will Dr H sell them to me or prescribe them? how do I know which minerals to give? I’m going straight to your link when I’ve finished writing this so you may not need to answer that last question. I am going to ask for her opinion too, by the way. I’ve got a feeling that she’s got a different take on it again.

>>No idea on suppositories, I always used oral. Talk to about the TD if you think you have trouble with oral.

Was your annual review terrible? Why?

>>Because they think I am talking out of my backside, rolling their eyes at the brushing even though I called Neurodevelopmental Therapy. They have stupid excuses for everything, as in I made the teachers nervous went I went in and was in the way with my video camera so thats why he didn;t get a single reinforcer or any praise for the whole morning I was there, that sort of thing.

He is NOT getting a differentitaed curriculum and today they tell me he is funded at 100% 1:1 so why the hell has he not got totally differentiated lessons?

They spend too much time with kids with behavioural issues whose parents send them to school on smarties and wotsits, drives me nuts. The IEP is meaningless - well I have that scrapped and they are starting over. They roll their eyes about GM - we'll show them.

Only there 10 mins and the head trots out about if I am not happy he can move schools. I told her the LEA assessed him a braindead so there is no other school so you are stuck with us babe! She suggested home ed - I said I am not doing that without funding and the LEA won't give it, been there done that, dumped the T-shirt.

Well maybe a $25K funded home programme might look more attractive to LEA now if he is on 1:1 which with transport is costing them just under £50K per year. Hmmmmmmmmmmm, I feel a bottle of wine coming on, I already had the Pizza and the Apple Turnovers - yummy!

Mad Manic Mandi

[Guest guest]

-Oh Boy Mandi, i think you need some chocolate with that!!!

Cyber hugs from me, Nikki

.. Hmmmmmmmmmmm, I feel a bottle of wine coming on, I already had the Pizza > and the Apple Turnovers - yummy!> > Mad Manic Mandi>

[Guest guest]



I agree, home education is very peaceful, you just need a good support person to help, and a part-time teacher and away you go. My daughter really blossomed when we took her out of the educational system, most kids do. All the stress of getting them to the door for 8.30 am to be picked up and then all the meetings after meetings getting yourselves so stressed out... this way we met up with other parents children who were being home educated and we managed to employ our own staff who did what we asked them and she enjoyed the last few years better than any in education, special or mainstreams.

If your educational authority is willing to give you the money, bite there hand off

good luck

Re: Dr Heard and the challenge test

Is he in special school with one to one? If he's worth £50K I would think another school would take him, Mandi. The head can hardly stop you moving him after saying that. Which one is he in? I am doing home ed because my daughter's special school was so dire. It's very peaceful.SallyMum231ASDaol wrote:>> In a message dated 01/11/2006 20:23:12 GMT Standard Time, > Moroza-@ Tiscali.co. uk writes:>> Oh Mandi, thanks ever so much for this brilliantly explained> answer. So where do I get these low dose suppositories? Will Dr H> sell them to me or prescribe them? how do I know which minerals to> give? I’m going straight to your link when I’ve finished writing> this so you may not need to answer that last question. I am going> to ask for her opinion too, by the way. I’ve got a feeling> that she’s got a different take on it again.>> > >>No idea on suppositories, I always used oral. Talk to about the > TD if you think you have trouble with oral .>> >> Was your annual review terrible? Why?>> > >>Because they think I am talking out of my backside, rolling their > eyes at the brushing even though I called Neurodevelopmental Therapy. > They have stupid excuses for everything, as in I made the teachers > nervous went I went in and was in the way with my video camera so > thats why he didn;t get a single reinforcer or any praise for the > whole morning I was there, that sort of thing.> > He is NOT getting a differentitaed curriculum and today they tell me > he is funded at 100% 1:1 so why the hell has he not got totally > differentiated lessons?> > They spend too much time with kids with behavioural issues whose > parents send them to school on smarties and wotsits, drives me nuts. > The IEP is meaningless - well I have that scrapped and they are > starting over. They roll their eyes about GM - we'll show them.> > Only there 10 mins and the head trots out about if I am not happy he > can move schools. I told her the LEA assessed him a braindead so there > is no other school so you are stuck with us babe! She suggested home > ed - I said I am not doing that without funding and the LEA won't give > it, been there done that, dumped the T-shirt.> > Well maybe a $25K funded home programme might look more attractive to > LEA now if he is on 1:1 which with transport is costing them just > under £50K per year. Hmmmmmmmmmmm, I feel a bottle of wine coming on, > I already had the Pizza and the Apple Turnovers - yummy!> > Mad Manic Mandi> > > ---------------------------------------------------------->> No virus found in this incoming message.> Checked by AVG Free Edition.> Version: 7.1.409 / Virus Database: 268.13.21/511 - Release Date: 01/11/2006>>

[Guest guest]

Thank you, Jane,

I’m definitely going to read up on the

Cutler protocol and ask her opinion.  Sorry your son had to go through all

that.

Sara x

Re:

Dr Heard and the challenge test

Hi Sara,

We saw Dr H recently. We told

him about a huge regression that we had seen in my 12 year old during the

summer. At the same time (around round 8 of oral dmsa as prescribed by Dr

H - 300mg 8 hoursly, 3 days on a 11 off, without minerals. We also told

him about large sores that had appeared just before this regression on my sons

nose, around his mouth and on his hands and elbows. We thought at the

time that the sore on his nose was a burn (but discounted this when they spread

to other parts of his body). His nose was so bad we ended up in A &

E. Dr H said he didn't think it could be connected to chelation, and

sounded more like a viral infection. We aren't so sure.

Immedicately after this we swapped to low, frequent dosing. I

discussed the swap during our visit to the Breakspear Hospital. Dr H was

fine with it. He said that some of his patients do well on 8 hourly and

others do better on more frequent dosing.

Jane

RE:

Dr Heard and the challenge test

Oh

Mandi, thanks ever so much for this brilliantly explained answer. So where do I

get these low dose suppositories? Will Dr H sell them to me or prescribe them?

how do I know which minerals to give? I’m going straight to your link when I’ve

finished writing this so you may not need to answer that last question. I am

going to ask for her opinion too, by the way. I’ve got a feeling that

she’s got a different take on it again.

Was your

annual review terrible? Why?

Lots and

lots of thanks,

Sara

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[Guest guest]

In a message dated 01/11/2006 22:45:55 GMT Standard Time, bobsallyeva@... writes:

Is he in special school with one to one? If he's worth £50K I would think another school would take him, Mandi.

>>I've been to see them all and apart from one that is unsuitable he doesn;t figure high enough on IQ tests to get in anywhere else. Headteacher was being defensive and had obviously not read our file - most likely didn't have anybody strong enough to lift that mountain out of the filing cabinet lol

The head can hardly stop you moving him after saying that. Which one is he in? I am doing home ed because my daughter's special school was so dire. It's very peaceful.

>>He is in autism specific purpose built independant - sounds fancy huh? It is. LEA will work WITH me to make them change, we did it before we can do it again, those that hold the purse strings help shift opinions IME

Mandi x

[Guest guest]

Mandi,

If the Head suggests home ed then get him/her to put this in their

Annual review report to the LEA, recommending that the Statement be

amended. Don't just withdraw Sam! Call their bluff.. Also, I'm

joining the Sensory Integration Network (,ost members are specialist

OTs) and that should provide some useful ammo re brushing etc. I'll

let you know if I get hold of anything. BIBIC also deal with retained

reflexes and it might be worth ringing them to ask about any studies

etc you could get hold of.

Margaret

> Was your annual review terrible? Why?

>

> >>Because they think I am talking out of my backside, rolling

their eyes at

> the brushing even though I called Neurodevelopmental Therapy. They

have

> stupid excuses for everything, as in I made the teachers nervous

went I went in

> and was in the way with my video camera so thats why he didn;t get

a single

> reinforcer or any praise for the whole morning I was there, that

sort of thing.

>

> He is NOT getting a differentitaed curriculum and today they tell

me he is

> funded at 100% 1:1 so why the hell has he not got totally

differentiated

> lessons?

>

> They spend too much time with kids with behavioural issues whose

parents

> send them to school on smarties and wotsits, drives me nuts. The

IEP is

> meaningless - well I have that scrapped and they are starting

over. They roll their

> eyes about GM - we'll show them.

>

> Only there 10 mins and the head trots out about if I am not happy

he can

> move schools. I told her the LEA assessed him a braindead so there

is no other

> school so you are stuck with us babe! She suggested home ed - I

said I am not

> doing that without funding and the LEA won't give it, been there

done that,

> dumped the T-shirt.

>

> Well maybe a $25K funded home programme might look more attractive

to LEA

> now if he is on 1:1 which with transport is costing them just

under £50K per

> year. Hmmmmmmmmmmm, I feel a bottle of wine coming on, I already

had the Pizza

> and the Apple Turnovers - yummy!

>

> Mad Manic Mandi

>

[Guest guest]

Do you mean that your annual review lasted 10 mins? Have a look at the

SEN Code of Practice. My daughter's special school used to completely

ignore it, no preparatory papers, no notice of meeting, no discussion.

Just " your AR is 9.30am tomorrow " . You cannot think out what you want

until you have seen their report and had an opportunity to respond. The

Code of Practice says all papers should be circulated 14 days before the

meeting. I used to say I would accept 7 but I wouldn't accept less than

that. Otherwise they are just taking you by surprise and bouncing you. I

agree that if they say take him away or home ed -- get them to write it

down. That would be helpful. Just being unpleasant in a " nice " kind of

way is not

Sally

mcollins2001uk wrote:

>

> Mandi,

> If the Head suggests home ed then get him/her to put this in their

> Annual review report to the LEA, recommending that the Statement be

> amended. Don't just withdraw Sam! Call their bluff.. Also, I'm

> joining the Sensory Integration Network (,ost members are specialist

> OTs) and that should provide some useful ammo re brushing etc. I'll

> let you know if I get hold of anything. BIBIC also deal with retained

> reflexes and it might be worth ringing them to ask about any studies

> etc you could get hold of.

> Margaret

>

>

> > Was your annual review terrible? Why?

> >

> > >>Because they think I am talking out of my backside, rolling

> their eyes at

> > the brushing even though I called Neurodevelopmental Therapy. They

> have

> > stupid excuses for everything, as in I made the teachers nervous

> went I went in

> > and was in the way with my video camera so thats why he didn;t get

> a single

> > reinforcer or any praise for the whole morning I was there, that

> sort of thing.

> >

> > He is NOT getting a differentitaed curriculum and today they tell

> me he is

> > funded at 100% 1:1 so why the hell has he not got totally

> differentiated

> > lessons?

> >

> > They spend too much time with kids with behavioural issues whose

> parents

> > send them to school on smarties and wotsits, drives me nuts. The

> IEP is

> > meaningless - well I have that scrapped and they are starting

> over. They roll their

> > eyes about GM - we'll show them.

> >

> > Only there 10 mins and the head trots out about if I am not happy

> he can

> > move schools. I told her the LEA assessed him a braindead so there

> is no other

> > school so you are stuck with us babe! She suggested home ed - I

> said I am not

> > doing that without funding and the LEA won't give it, been there

> done that,

> > dumped the T-shirt.

> >

> > Well maybe a $25K funded home programme might look more attractive

> to LEA

> > now if he is on 1:1 which with transport is costing them just

> under £50K per

> > year. Hmmmmmmmmmmm, I feel a bottle of wine coming on, I already

> had the Pizza

> > and the Apple Turnovers - yummy!

> >

> > Mad Manic Mandi

> >

>

>

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

>

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.1.409 / Virus Database: 268.13.25/515 - Release Date: 03/11/2006

>

>

[Guest guest]

Hello,

I have just joined this group after having seen the name on the

autism treatment list. It's really helpful because I live in

Switzerland. I have a 10 year old daugher who I am home schooling(we

did it when she was younger and then she went to a specail school for

3 years but I have really high standards-I've learned so much over

the years!-and I pulled her out). My husband is British and the other

option is to move to the UK for more schooling opportunities. Our

options are limited to home schooling due to poor services in this

otherwise beautiful country and also the fact that we teach my

daugher in English and every word is a victory so French is not an

option.

I really need to learn about the options I would have in the UK

before uprooting the family. My husband could be transferd to London

if he asked to be so the school would have to be no more than 2 hours

from London. Could anyone help me get started? I have the GOod School

Guide but after her last school experience which sounded great on

paper and looked ok during a visit in reality was NOT. Please feel

free to contact me privately, I'd really appreciate it. I am looking

for a school that has experience and encouraged augmented

communication(Dynavox, etc) along with functional activites and

encouraging verbal along the way. Am I being unreasonable?!

Many thanks,

[Guest guest]

I agree with you completely. Get the lea to demand value for money. It's

a lot of money

Sally

Mum231ASD@... wrote:

>

> In a message dated 01/11/2006 22:45:55 GMT Standard Time, bobsallyeva@

> ntlworld. com writes:

>

> Is he in special school with one to one? If he's worth £50K I would

> think another school would take him, Mandi.

>

>

> >>I've been to see them all and apart from one that is unsuitable he

> doesn;t figure high enough on IQ tests to get in anywhere else.

> Headteacher was being defensive and had obviously not read our file -

> most likely didn't have anybody strong enough to lift that mountain

> out of the filing cabinet lol

>

>

> The head can hardly stop you

> moving him after saying that. Which one is he in? I am doing home ed

> because my daughter's special school was so dire. It's very peaceful.

>

>

> >>He is in autism specific purpose built independant - sounds fancy

> huh? It is. LEA will work WITH me to make them change, we did it

> before we can do it again, those that hold the purse strings help

> shift opinions IME

>

> Mandi x

>

>

>

>

>

>

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

>

> No virus found in this incoming message.

> Checked by AVG Free Edition.

> Version: 7.1.409 / Virus Database: 268.13.25/515 - Release Date: 03/11/2006

>

>

[Guest guest]

Manders,

I missed the start of this thread - are you having school problems with

Sam? Can you update me?

Love

- also in the throws of school problems re finding one for him

from September!!

Mum231ASD@... wrote:

> In a message dated 01/11/2006 22:45:55 GMT Standard Time,

> bobsallyeva@... writes:

>

> Is he in special school with one to one? If he's worth £50K I would

> think another school would take him, Mandi.

>

>

> >>I've been to see them all and apart from one that is unsuitable he

> doesn;t figure high enough on IQ tests to get in anywhere else.

> Headteacher was being defensive and had obviously not read our file -

> most likely didn't have anybody strong enough to lift that mountain

> out of the filing cabinet lol

>

>

> The head can hardly stop you

> moving him after saying that. Which one is he in? I am doing home ed

> because my daughter's special school was so dire. It's very peaceful.

>

>

> >>He is in autism specific purpose built independant - sounds fancy

> huh? It is. LEA will work WITH me to make them change, we did it

> before we can do it again, those that hold the purse strings help

> shift opinions IME

>

> Mandi x

>

>

>

>

>

>

>