RE: Mandi-help with porphyrin testing

[Guest guest]

When you do the French porphyrin test is there an amount of time you are not supposed to have chelated?

>>Nope I spoke to Dr Nataf at Autism One - you can take the test anytime

Thinking we may be close to done here and awaiting the results of the whole blood porphyrin testing we had done. If there is no good info from that thinking the do the French one.

Hoping things are going well at your house.

>>I am sooooo frustrated - I have 32+ bottles of NCD 'in the post' now for nearly 4 weeks - damn USPS I have customers waiting and we have NONE - arghhhhhhhhh Sam got the bottle because I'd put in out to remind myself to do frequent dosing with it, he chewed the top off and emptied it out. I let my spare go to a customer thinking o rpiblem it will be here in a few days (usually takes 5 days with global pritority) they checked the cvlick and shop and it hadn;t even left the USA So I ordered even more and hoping DHL come through......

He's not lost any gains and is a cool dude but I want some NCD!!! Went to a party yesterday for one of his classmates and we hadn;t seen those mums in nearly a year and they were gobsmacked at how well he looked and how calm he was.

This morning we went to the park and foudn the paddling pool fenced off - after lookign a tad confused for 3 mins he decided to have a go onthe merry-go round and wow - looked like he'd been using it all his life, jumpign on and off, signing for Joe to join him - one of those cool - hey my kid looks totally normal moments! I am sure this brushing thingey is helping smooth out all his movements - he looks as if he fits in his body now

Mandi x

[Guest guest]

In a message dated 24/08/2006 19:22:14 GMT Daylight Time, Mum231ASD@... writes:

>>I am sooooo frustrated - I have 32+ bottles of NCD 'in the post' now for nearly 4 weeks - damn USPS I have customers waiting and we have NONE - arghhhhhhhhh Sam got the bottle because I'd put in out to remind myself to do frequent dosing with it, he chewed the top off and emptied it out. I let my spare go to a customer thinking o rpiblem it will be here in a few days (usually takes 5 days with global pritority) they checked the cvlick and shop and it hadn;t even left the USA So I ordered even more and hoping DHL come through......

Whens it coming? I dont want to stop using it either... Poor you helping everyone else then running out yourself... Nightmare hope it comes soon.

Love Caroline

xxx

[Guest guest]

In a message dated 24/08/2006 22:39:03 GMT Daylight Time, Ladyshrink111@... writes:

Sorry about the NCD, Sam must have wanted some very badly to chew the top off, lol. Glad he is doing so well, know how long you have waited to see improvements, fabulous!!

>>>Yesterday the Social Worker came to do our Direct payments review. Sam made himself some toast, got a plate out, put it on the plate, got the butter and marmite out and brought me a knife while we were talking.

I did the honors cleaned the knife and left the rest coz I knew what he would do - I told her to watch, he put the marmite away, went to put the butter inthe fridge and it dropped, a bit squeezed out on the floor, he picked it up put the lid on, put it away and then, tad dah got the cloth cleaned up the floor, took his toast and went on his way - bloody marvelous - her jaw was hanging open - purfik moment

Mandi x

[Guest guest]

In a message dated 24/08/2006 19:51:06 GMT Daylight Time, CarolineTraa@... writes:

So I ordered even more and hoping DHL come through......

Whens it coming? I dont want to stop using it either... Poor you helping everyone else then running out yourself... Nightmare hope it comes soon.

>>>>Its leaving Oregon by DHL tomorrow so 3-5 days fingers and all bits crossed

Mandi x

[Guest guest]

Thanks, Mandi,

Well, that's interesting that you could do it anytime, but does that sound logical to you? I guess I can see that it wouldn't/shouldn't matter what you are stirring up and if there were little metals you would be still be stirring up little metals, following me :-) I think I am following me.

Sorry about the NCD, Sam must have wanted some very badly to chew the top off, lol. Glad he is doing so well, know how long you have waited to see improvements, fabulous!!

Re: Mandi-help with porphyrin testing

When you do the French porphyrin test is there an amount of time you are not supposed to have chelated?

>>Nope I spoke to Dr Nataf at Autism One - you can take the test anytime

Thinking we may be close to done here and awaiting the results of the whole blood porphyrin testing we had done. If there is no good info from that thinking the do the French one.

Hoping things are going well at your house.

>>I am sooooo frustrated - I have 32+ bottles of NCD 'in the post' now for nearly 4 weeks - damn USPS I have customers waiting and we have NONE - arghhhhhhhhh Sam got the bottle because I'd put in out to remind myself to do frequent dosing with it, he chewed the top off and emptied it out. I let my spare go to a customer thinking o rpiblem it will be here in a few days (usually takes 5 days with global pritority) they checked the cvlick and shop and it hadn;t even left the USA So I ordered even more and hoping DHL come through......

He's not lost any gains and is a cool dude but I want some NCD!!! Went to a party yesterday for one of his classmates and we hadn;t seen those mums in nearly a year and they were gobsmacked at how well he looked and how calm he was.

This morning we went to the park and foudn the paddling pool fenced off - after lookign a tad confused for 3 mins he decided to have a go onthe merry-go round and wow - looked like he'd been using it all his life, jumpign on and off, signing for Joe to join him - one of those cool - hey my kid looks totally normal moments! I am sure this brushing thingey is helping smooth out all his movements - he looks as if he fits in his body now

Mandi x

[Guest guest]

Mandi,

So pleased that Sam is doing so well. Can you explain the brushing? it sounds interesting.

Thanks

Re: Mandi-help with porphyrin testing

When you do the French porphyrin test is there an amount of time you are not supposed to have chelated?

>>Nope I spoke to Dr Nataf at Autism One - you can take the test anytime

Thinking we may be close to done here and awaiting the results of the whole blood porphyrin testing we had done. If there is no good info from that thinking the do the French one.

Hoping things are going well at your house.

>>I am sooooo frustrated - I have 32+ bottles of NCD 'in the post' now for nearly 4 weeks - damn USPS I have customers waiting and we have NONE - arghhhhhhhhh Sam got the bottle because I'd put in out to remind myself to do frequent dosing with it, he chewed the top off and emptied it out. I let my spare go to a customer thinking o rpiblem it will be here in a few days (usually takes 5 days with global pritority) they checked the cvlick and shop and it hadn;t even left the USA So I ordered even more and hoping DHL come through......

He's not lost any gains and is a cool dude but I want some NCD!!! Went to a party yesterday for one of his classmates and we hadn;t seen those mums in nearly a year and they were gobsmacked at how well he looked and how calm he was.

This morning we went to the park and foudn the paddling pool fenced off - after lookign a tad confused for 3 mins he decided to have a go onthe merry-go round and wow - looked like he'd been using it all his life, jumpign on and off, signing for Joe to join him - one of those cool - hey my kid looks totally normal moments! I am sure this brushing thingey is helping smooth out all his movements - he looks as if he fits in his body now

Mandi x

[Guest guest]

In a message dated 24/08/2006 23:59:40 GMT Daylight Time, onthesosh@... writes:

I've got a nearly full bottle sitting here. isn't having any at the moment and I'm not planning to revisit in the next week or two. Should I see if I can get it in the post to you tomorrow?

>>>Thanks Patience its OK, I am going to start a DMSA/ALA round tomorrow I think its about we did anyways but nice offer thanks

Mandi x

[Guest guest]

Hi Mandi, I've got a nearly full bottle sitting here. isn't having any at the moment and I'm not planning to revisit in the next week or two. Should I see if I can get it in the post to you tomorrow? PatienceMum231ASD@... wrote: In a message dated 24/08/2006 19:51:06 GMT Daylight Time, CarolineTraaaol writes: So I ordered even more and hoping DHL come through...... Whens it coming? I dont want to stop using it either... Poor you helping everyone else then running out yourself... Nightmare hope it comes soon. >>>>Its leaving Oregon by DHL tomorrow so 3-5 days fingers and all bits crossed Mandi x

All new "The new Interface is stunning in its simplicity and ease of use." - PC Magazine

[Guest guest]

I also need some help on this!!! A new neurologist actually suggested

doing this test! I could not believe my ears. However, my questions---

-Is there a reliable US lab for getting this done? Anyone know why

this test has the reputation of being so finicky/false negative

prone? Are folks using the French lab because you don't need a

doctor's order? or more reliable? etc. We live in the middle of the

US and I haven't called to see where they'd send the sample, which

was ordered as a 24 hour urine collection[is that accurate?]. Thanks,

..

>

> Thanks, Mandi,

>

> Well, that's interesting that you could do it anytime, but does

that sound logical to you? I guess I can see that it

wouldn't/shouldn't matter what you are stirring up and if there were

little metals you would be still be stirring up little metals,

following me :-) I think I am following me.

>

> Sorry about the NCD, Sam must have wanted some very badly to chew

the top off, lol. Glad he is doing so well, know how long you have

waited to see improvements, fabulous!!

>

>

>

>

> Re: Mandi-help with porphyrin

testing

>

>

>

>

>

>

> When you do the French porphyrin test is there an amount of time

you are not supposed to have chelated?

>

>

> >>Nope I spoke to Dr Nataf at Autism One - you can take the test

anytime

>

> Thinking we may be close to done here and awaiting the results of

the whole blood porphyrin testing we had done. If there is no good

info from that thinking the do the French one.

>

> Hoping things are going well at your house.

>

> >>I am sooooo frustrated - I have 32+ bottles of NCD 'in the

post' now for nearly 4 weeks - damn USPS I have customers waiting and

we have NONE - arghhhhhhhhh Sam got the bottle because I'd put in out

to remind myself to do frequent dosing with it, he chewed the top off

and emptied it out. I let my spare go to a customer thinking o

rpiblem it will be here in a few days (usually takes 5 days with

global pritority) they checked the cvlick and shop and it hadn;t even

left the USA So I ordered even more and hoping DHL come through......

>

> He's not lost any gains and is a cool dude but I want some NCD!!!

Went to a party yesterday for one of his classmates and we hadn;t

seen those mums in nearly a year and they were gobsmacked at how

well he looked and how calm he was.

>

> This morning we went to the park and foudn the paddling pool

fenced off - after lookign a tad confused for 3 mins he decided to

have a go onthe merry-go round and wow - looked like he'd been using

it all his life, jumpign on and off, signing for Joe to join him -

one of those cool - hey my kid looks totally normal moments! I am

sure this brushing thingey is helping smooth out all his movements -

he looks as if he fits in his body now

>

> Mandi x

>

[Guest guest]

I'm hearing you can get this done in a Florida lab, think Bradstreet gets his done there. The French one is more detailed, but the American lab serves as well. In time, thinking the American lab will offer the same detailed report.

I don't know about the American test, but the French test only requires a first of the morning urine sample, couldn't be easier.

Re: Mandi-help with porphyrin testing> > > > > > > When you do the French porphyrin test is there an amount of time you are not supposed to have chelated?> > > >>Nope I spoke to Dr Nataf at Autism One - you can take the test anytime> > Thinking we may be close to done here and awaiting the results of the whole blood porphyrin testing we had done. If there is no good info from that thinking the do the French one.> > Hoping things are going well at your house.> > >>I am sooooo frustrated - I have 32+ bottles of NCD 'in the post' now for nearly 4 weeks - damn USPS I have customers waiting and we have NONE - arghhhhhhhhh Sam got the bottle because I'd put in out to remind myself to do frequent dosing with it, he chewed the top off and emptied it out. I let my spare go to a customer thinking o rpiblem it will be here in a few days (usually takes 5 days with global pritority) they checked the cvlick and shop and it hadn;t even left the USA So I ordered even more and hoping DHL come through......> > He's not lost any gains and is a cool dude but I want some NCD!!! Went to a party yesterday for one of his classmates and we hadn;t seen those mums in nearly a year and they were gobsmacked at how well he looked and how calm he was.> > This morning we went to the park and foudn the paddling pool fenced off - after lookign a tad confused for 3 mins he decided to have a go onthe merry-go round and wow - looked like he'd been using it all his life, jumpign on and off, signing for Joe to join him - one of those cool - hey my kid looks totally normal moments! I am sure this brushing thingey is helping smooth out all his movements - he looks as if he fits in his body now> > Mandi x>

[Guest guest]

In a message dated 24/08/2006 22:57:22 GMT Daylight Time, Mum231ASD@... writes:

>>>Yesterday the Social Worker came to do our Direct payments review. Sam made himself some toast, got a plate out, put it on the plate, got the butter and marmite out and brought me a knife while we were talking.

I did the honors cleaned the knife and left the rest coz I knew what he would do - I told her to watch, he put the marmite away, went to put the butter inthe fridge and it dropped, a bit squeezed out on the floor, he picked it up put the lid on, put it away and then, tad dah got the cloth cleaned up the floor, took his toast and went on his way - bloody marvelous - her jaw was hanging open - purfik moment

My jaws hanging open too, thats brilliant what a little star, that davids got him well sorted with all that cleaning and since dave and harry are so alike hopefully becky be doing this too soon!!

Luv caroline

xx

[Guest guest]

In a message dated 25/08/2006 08:11:04 GMT Daylight Time, jacqui@... writes:

Can anyone tell me approximately how much this test costs and if a doctor needs to request one?

>>You can order without a doctor, I think its abotu 90 euros and you get 15% discount if child has autism I think

Mandi x

[Guest guest]

>>This morning we went to the

park and foudn the paddling pool fenced off - after lookign a tad confused for 3 mins

he decided to have a go onthe merry-go round and wow

- looked like he'd been using it all his life, jumpign

on and off, signing for Joe to join him - one of those cool - hey my kid looks

totally normal moments! I am sure this brushing thingey

is helping smooth out all his movements - he looks as if he fits in his body

now

Mandi, wish I’d seen it – love those momentsJ

Elaine

Re:

Mandi-help with porphyrin testing

When you do the French porphyrin test is there an amount of time

you are not supposed to have chelated?

>>Nope I spoke to Dr Nataf at Autism One - you can take

the test anytime

Thinking we may be close to done here and awaiting the

results of the whole blood porphyrin testing we had done. If there is no

good info from that thinking the do the French one.

Hoping things are going well at your house.

>>I am sooooo frustrated - I have 32+ bottles of NCD 'in

the post' now for nearly 4 weeks - damn USPS I have customers waiting and we

have NONE - arghhhhhhhhh Sam got the bottle because I'd put in out to remind

myself to do frequent dosing with it, he chewed the top off and emptied it out.

I let my spare go to a customer thinking o rpiblem it will be here in a few

days (usually takes 5 days with global pritority) they checked the cvlick and

shop and it hadn;t even left the USA So I ordered even more

and hoping DHL come through......

He's not lost any gains and is a cool dude but I want some

NCD!!! Went to a party yesterday for one of his classmates and we hadn;t seen

those mums in nearly a year and they were gobsmacked at how well he

looked and how calm he was.

This morning we went to the park and foudn the paddling pool

fenced off - after lookign a tad confused for 3 mins he decided to have a go

onthe merry-go round and wow - looked like he'd been using it all his life,

jumpign on and off, signing for Joe to join him - one of those cool - hey my

kid looks totally normal moments! I am sure this brushing thingey is helping

smooth out all his movements - he looks as if he fits in his body now

Mandi x

e-mail provided by Moose Internet Services

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

[Guest guest]

Hi all

Can anyone tell me approximately how much this test costs and if a doctor needs to request one?

Can't find the info on the website.

TIA

Jacqui

[Guest guest]

Hi

We are with Bradstreets clinic and they use the French lab.

Peta-

-- In Autism Treatment , " Cochran "

<Ladyshrink111@...> wrote:

>

> I'm hearing you can get this done in a Florida lab, think

Bradstreet gets his done there. The French one is more detailed, but

the American lab serves as well. In time, thinking the American lab

will offer the same detailed report.

>

> I don't know about the American test, but the French test only

requires a first of the morning urine sample, couldn't be easier.

>

>

> Re: Mandi-help with

porphyrin

> testing

> >

> >

> >

> >

> >

> >

> > When you do the French porphyrin test is there an amount of

time

> you are not supposed to have chelated?

> >

> >

> > >>Nope I spoke to Dr Nataf at Autism One - you can take the

test

> anytime

> >

> > Thinking we may be close to done here and awaiting the results

of

> the whole blood porphyrin testing we had done. If there is no

good

> info from that thinking the do the French one.

> >

> > Hoping things are going well at your house.

> >

> > >>I am sooooo frustrated - I have 32+ bottles of NCD 'in the

> post' now for nearly 4 weeks - damn USPS I have customers

waiting and

> we have NONE - arghhhhhhhhh Sam got the bottle because I'd put

in out

> to remind myself to do frequent dosing with it, he chewed the

top off

> and emptied it out. I let my spare go to a customer thinking o

> rpiblem it will be here in a few days (usually takes 5 days with

> global pritority) they checked the cvlick and shop and it hadn;t

even

> left the USA So I ordered even more and hoping DHL come

through......

> >

> > He's not lost any gains and is a cool dude but I want some

NCD!!!

> Went to a party yesterday for one of his classmates and we

hadn;t

> seen those mums in nearly a year and they were gobsmacked at how

> well he looked and how calm he was.

> >

> > This morning we went to the park and foudn the paddling pool

> fenced off - after lookign a tad confused for 3 mins he decided

to

> have a go onthe merry-go round and wow - looked like he'd been

using

> it all his life, jumpign on and off, signing for Joe to join

him -

> one of those cool - hey my kid looks totally normal moments! I

am

> sure this brushing thingey is helping smooth out all his

movements -

> he looks as if he fits in his body now

> >

> > Mandi x

> >

>

[Guest guest]

Oh, I had heard on asd solutions that Bradstreet had made arrangements for the test to be done in a local (to them) lab, but thanks for the correction.

But then I just figured out we could get all our testing done through Great Plains and insurance will pay for it. We're nearly done but I guess better late than never.

Re: Mandi-help with porphyrin > testing> > > > > > > > > > > > > > When you do the French porphyrin test is there an amount of time > you are not supposed to have chelated?> > > > > > >>Nope I spoke to Dr Nataf at Autism One - you can take the test > anytime> > > > Thinking we may be close to done here and awaiting the results of > the whole blood porphyrin testing we had done. If there is no good > info from that thinking the do the French one.> > > > Hoping things are going well at your house.> > > > >>I am sooooo frustrated - I have 32+ bottles of NCD 'in the > post' now for nearly 4 weeks - damn USPS I have customers waiting and > we have NONE - arghhhhhhhhh Sam got the bottle because I'd put in out > to remind myself to do frequent dosing with it, he chewed the top off > and emptied it out. I let my spare go to a customer thinking o > rpiblem it will be here in a few days (usually takes 5 days with > global pritority) they checked the cvlick and shop and it hadn;t even > left the USA So I ordered even more and hoping DHL come through......> > > > He's not lost any gains and is a cool dude but I want some NCD!!! > Went to a party yesterday for one of his classmates and we hadn;t > seen those mums in nearly a year and they were gobsmacked at how > well he looked and how calm he was.> > > > This morning we went to the park and foudn the paddling pool > fenced off - after lookign a tad confused for 3 mins he decided to > have a go onthe merry-go round and wow - looked like he'd been using > it all his life, jumpign on and off, signing for Joe to join him - > one of those cool - hey my kid looks totally normal moments! I am > sure this brushing thingey is helping smooth out all his movements - > he looks as if he fits in his body now> > > > Mandi x> >>

[Guest guest]

Hi Mandi,

Can I send you one of my bottles? Probably won't get it till tue at the earliest with it being the bank holiday.

Let me know and I can post it tomorrow morning.

Sally

From: Autism Treatment [mailto:Autism Treatment ] On Behalf Of Mum231ASD@...Sent: Thursday, August 24, 2006 7:11 PMAutism Treatment Subject: Re: Mandi-help with porphyrin testing

When you do the French porphyrin test is there an amount of time you are not supposed to have chelated?

>>Nope I spoke to Dr Nataf at Autism One - you can take the test anytime

Thinking we may be close to done here and awaiting the results of the whole blood porphyrin testing we had done. If there is no good info from that thinking the do the French one.

Hoping things are going well at your house.

>>I am sooooo frustrated - I have 32+ bottles of NCD 'in the post' now for nearly 4 weeks - damn USPS I have customers waiting and we have NONE - arghhhhhhhhh Sam got the bottle because I'd put in out to remind myself to do frequent dosing with it, he chewed the top off and emptied it out. I let my spare go to a customer thinking o rpiblem it will be here in a few days (usually takes 5 days with global pritority) they checked the cvlick and shop and it hadn;t even left the USA So I ordered even more and hoping DHL come through......

He's not lost any gains and is a cool dude but I want some NCD!!! Went to a party yesterday for one of his classmates and we hadn;t seen those mums in nearly a year and they were gobsmacked at how well he looked and how calm he was.

This morning we went to the park and foudn the paddling pool fenced off - after lookign a tad confused for 3 mins he decided to have a go onthe merry-go round and wow - looked like he'd been using it all his life, jumpign on and off, signing for Joe to join him - one of those cool - hey my kid looks totally normal moments! I am sure this brushing thingey is helping smooth out all his movements - he looks as if he fits in his body now

Mandi x

[Guest guest]

In a message dated 24/08/2006 19:43:03 GMT Daylight Time, sandrabarrett@... writes:

So pleased that Sam is doing so well. Can you explain the brushing? it sounds interesting.

>>>Its about adressing retained and immature reflexes. Sam had one he shoudl of lost in the womb for instance. I think same principles as they do Pleto for CP kids.

The brush is small fine looks like kids cheap paintbrush. You use it very finely - stimulates the mid -brain? I shoudl brush myself- feels like my mid brain is missing

Mandi x