Re: Lori/was:Can anyone give me advice?

March 30, 2006

Can you tell us what chelator, the dose and how frequently you dosed the

chelator?

[ ] Can anyone give me advice?

My 3 year old started chelation in December 2005. We did about 2

months of treatment, changed his diet and continue to give him the

standard supplements for autism. (He has not been diagnosed)

I have to say that our son is the same as he was when we started

the DAN treatment. He has not changed at all. Still stimms, little

eye contact, no language ..etc....

The only positive difference is that his face and ears are no longer

red since we changed his diet.

I feel hopeless. Is this just not meant to be? I want so badly for

him to learn and be happy, but it seems thats never going to happen.

The last urine test showed that the lead and mercury were infact

very low. Low enough that his doctor said to stop giving him the

DMSA.

Still no change. I feel like I've tried everything to help him.

Can anyone give me some advice on what I can do from here?

Thanks

Lori B

=======================================================

March 30, 2006

Hi ;

He was given DMSA 2 caps every 4 hours, 4 days on 3 days off.

On the days that he didnt get the DMSA we gave him ALA twice a day

and Cilantro on his arms 2 times a day.

In just 2 months his mercury went from 5 to a 3 and lead from 33 to

2.

I forgot to mention that he also had 2 rounds of Nistatin for the

yeast.

Thanks

Lori

>

> Can you tell us what chelator, the dose and how frequently you

dosed the chelator?

>

> [ ] Can anyone give me advice?

>

> My 3 year old started chelation in December 2005. We did about

2

> months of treatment, changed his diet and continue to give him

the

> standard supplements for autism. (He has not been diagnosed)

>

> I have to say that our son is the same as he was when we

started

> the DAN treatment. He has not changed at all. Still stimms,

little

> eye contact, no language ..etc....

> The only positive difference is that his face and ears are no

longer

> red since we changed his diet.

>

> I feel hopeless. Is this just not meant to be? I want so badly

for

> him to learn and be happy, but it seems thats never going to

happen.

>

> The last urine test showed that the lead and mercury were infact

> very low. Low enough that his doctor said to stop giving him

the

> DMSA.

>

> Still no change. I feel like I've tried everything to help him.

> Can anyone give me some advice on what I can do from here?

>

> Thanks

> Lori B

>

> =======================================================

>

March 30, 2006

I am going to jump in here only having read a couple of the posts in this

thread...hope you don't mind...

The problem I see isn't in which chelators you are giving (except one) but the

dosages and or the timing of the dosages.

DMSA and ALA are both great chelators, we use them with our son.

The DMSA should be given every 4 hours around the clock for 3 days and then

rest for a couple days. The dosage is to being with 1/8 to 1/4 mg per pound of

body weight with each dose. Most begin with about 12 mg per dose.

The ALA should be given every 3 hours but can be stretched to every 4 hours at

night. The dosage recommendation is the same. Most start with about 12 mg.

Cilantro isn't recommended because although it is able to remove metals from

the brain even, there just isn't much research on it to know how best to use it.

Everything with it is very experimental. Some do well with it and others really

do not.

There are several different views on when and how much. What I have learned

on this list over the past several months is that those who follow the above

recommendations rarely have any problems other than yeast and that is just

something that happens when you chelate. We have been doing it like that for

awhile now and are getting fantastic results.

Hope this helps,

ldbender <ldbender@...> wrote:

Hi ;

He was given DMSA 2 caps every 4 hours, 4 days on 3 days off.

On the days that he didnt get the DMSA we gave him ALA twice a day

and Cilantro on his arms 2 times a day.

In just 2 months his mercury went from 5 to a 3 and lead from 33 to

2.

I forgot to mention that he also had 2 rounds of Nistatin for the

yeast.

Thanks

Lori

>

> Can you tell us what chelator, the dose and how frequently you

dosed the chelator?

>

> [ ] Can anyone give me advice?

>

> My 3 year old started chelation in December 2005. We did about

2

> months of treatment, changed his diet and continue to give him

the

> standard supplements for autism. (He has not been diagnosed)

>

> I have to say that our son is the same as he was when we

started

> the DAN treatment. He has not changed at all. Still stimms,

little

> eye contact, no language ..etc....

> The only positive difference is that his face and ears are no

longer

> red since we changed his diet.

>

> I feel hopeless. Is this just not meant to be? I want so badly

for

> him to learn and be happy, but it seems thats never going to

happen.

>

> The last urine test showed that the lead and mercury were infact

> very low. Low enough that his doctor said to stop giving him

the

> DMSA.

>

> Still no change. I feel like I've tried everything to help him.

> Can anyone give me some advice on what I can do from here?

>

> Thanks

> Lori B

>

> =======================================================

>

March 30, 2006

Oh my, Lori, you didn't mention whether you had a dr who prescribed this

protocol. If you did have a dr, could you post his/her name and city and town?

You also didn't say what dosage the dmsa was. Dmsa should be dosed at only

1/8-1/4 mg per lb of kid to start. Ala, also dosed at 1/8-1/4 mg per lb should

be given every 3 hours round the clock. Ala given less frequently than every 3

hours can cause redistribution and make kids worse, or at least, not allow them

to get any better.

Cilantro, due to its inconsistency is normally not recommended. The Nyastatin is

fine.

[ ] Can anyone give me advice?

>

> My 3 year old started chelation in December 2005. We did about

2

> months of treatment, changed his diet and continue to give him

the

> standard supplements for autism. (He has not been diagnosed)

>

> I have to say that our son is the same as he was when we

started

> the DAN treatment. He has not changed at all. Still stimms,

little

> eye contact, no language ..etc....

> The only positive difference is that his face and ears are no

longer

> red since we changed his diet.

>

> I feel hopeless. Is this just not meant to be? I want so badly

for

> him to learn and be happy, but it seems thats never going to

happen.

>

> The last urine test showed that the lead and mercury were infact

> very low. Low enough that his doctor said to stop giving him

the

> DMSA.

>

> Still no change. I feel like I've tried everything to help him.

> Can anyone give me some advice on what I can do from here?

>

> Thanks

> Lori B

>

> =======================================================

>

March 30, 2006

;

Our DAN doctor is in Brentwood, Tennessee. I live about 20 miles

south. His name is Dr. Chapdelaine.

We're supposed to go back for a follow up next month.

Are you suggesting that we take another look at the chelation

treatment?

The DMSA dosage was 50 mg every 4 hours.

Thats the dosage that the doctor prescribed him. I'm guessing since

my son is only 27 lbs he didnt want to give him more than that.

We also did all the standard testing. Blood work for food

allergies, stool sample for yeast and hair and uring for metal

toxicity. The doctor based his protocol from the results of the

testing.

I guess I sould also mention that my son is adopted. He was born in

Russia. So we know little about his medical and family history.

Thanks

Lori

> >

> > Can you tell us what chelator, the dose and how frequently you

> dosed the chelator?

> >

> > [ ] Can anyone give me advice?

> >

> > My 3 year old started chelation in December 2005. We did

about

> 2

> > months of treatment, changed his diet and continue to give

him

> the

> > standard supplements for autism. (He has not been diagnosed)

> >

> > I have to say that our son is the same as he was when we

> started

> > the DAN treatment. He has not changed at all. Still

stimms,

> little

> > eye contact, no language ..etc....

> > The only positive difference is that his face and ears are

no

> longer

> > red since we changed his diet.

> >

> > I feel hopeless. Is this just not meant to be? I want so

badly

> for

> > him to learn and be happy, but it seems thats never going to

> happen.

> >

> > The last urine test showed that the lead and mercury were

infact

> > very low. Low enough that his doctor said to stop giving

him

> the

> > DMSA.

> >

> > Still no change. I feel like I've tried everything to help

him.

> > Can anyone give me some advice on what I can do from here?

> >

> > Thanks

> > Lori B

> >

> > =======================================================

> >

March 30, 2006

>>I guess I sould also mention that my son is adopted. He was born in

Russia. So we know little about his medical and family history.

LOTS of kids from Russia, Eastern Europe, etc. who were adopted out to

foreign countries spent time in understaffed orphanages where they were

often confined to cribs, tied down, etc. as the only means to protect them

in the face of too little supervision. These kids have a tremendous social

deficit that must be overcome and it takes a lot of time having more normal

social interaction to overcome their underdevelopment. That alone can cause

" autistic like " social issues because brain development is a product of a

combination of physical growth and environmental stimuli. Throw in the

language/culture barrier and you have plenty of causes of inability to

connect that do not have to have ANY medical component. Perhaps you need to

connect with a group dealing with international adoptees for support for

that issue?

--

Michele in Limbo (formerly in California)

talithamichele@...

Visit Michele's World!

http://www.califmichele.com

" Peace cannot be kept by force. It can only be achieved by understanding. "

-- Albert Einstein

March 30, 2006

Our DAN doctor is in Brentwood, Tennessee. I live about 20 miles

south. His name is Dr. Chapdelaine.

We're supposed to go back for a follow up next month.

Are you suggesting that we take another look at the chelation

treatment?

<<<Yes, yes, not trying to be rude but the protocol he gave is dangerous. He got

the timing of the dmsa right, but the amounts are way too high. 1/4 mg per for

your boy would be 7 mgs dmsa every 4 hours. You don't get more metals out with

higher doses and higher doses can create a lot more unpleasant side effects.

Ala is a chelator, must be given every 3 hours. It is important to keep a steady

level of any chelator in the body to prevent the metals/mercury from

redistributing to vital organs such as the liver or the brain. Giving Ala twice

a day can make your boy worse,or more autistic.

Do some reading in the files section for yourself to find out why giving the

chelators with regard to their half-life, or how long they stay in the body, is

important.

IMO, find another dr, or just use this one for testing and dose the chelators at

the low/frequent dosing to prevent redistribution yourself.>>>>>

Good luck,

The DMSA dosage was 50 mg every 4 hours.

Thats the dosage that the doctor prescribed him. I'm guessing since

my son is only 27 lbs he didnt want to give him more than that.

We also did all the standard testing. Blood work for food

allergies, stool sample for yeast and hair and uring for metal

toxicity. The doctor based his protocol from the results of the

testing.

I guess I sould also mention that my son is adopted. He was born in

Russia. So we know little about his medical and family history.

Thanks

Lori

> >

> > Can you tell us what chelator, the dose and how frequently you

> dosed the chelator?

> >

> > [ ] Can anyone give me advice?

> >

> > My 3 year old started chelation in December 2005. We did

about

> 2

> > months of treatment, changed his diet and continue to give

him

> the

> > standard supplements for autism. (He has not been diagnosed)

> >

> > I have to say that our son is the same as he was when we

> started

> > the DAN treatment. He has not changed at all. Still

stimms,

> little

> > eye contact, no language ..etc....

> > The only positive difference is that his face and ears are

no

> longer

> > red since we changed his diet.

> >

> > I feel hopeless. Is this just not meant to be? I want so

badly

> for

> > him to learn and be happy, but it seems thats never going to

> happen.

> >

> > The last urine test showed that the lead and mercury were

infact

> > very low. Low enough that his doctor said to stop giving

him

> the

> > DMSA.

> >

> > Still no change. I feel like I've tried everything to help

him.

> > Can anyone give me some advice on what I can do from here?

> >

> > Thanks

> > Lori B

> >

> > =======================================================

> >

March 30, 2006

Thanks .

You Rock! Sounds like you have done allot of research

on this.

You're right about the nasty side effects. Right away

I noticed my son getting very sleepy and fussy all the

time while he was on DMSA. He also regressed a

little. Lost the ability to say " baba, and Papa " .

I will definitely ask about this when we go back to

see the doctor. As far as finding another DAN doctor,

he is the only one on the list for Tennessee.

Lori

--- Cochran <Ladyshrink111@...>

wrote:

> Our DAN doctor is in Brentwood, Tennessee. I live

> about 20 miles

> south. His name is Dr. Chapdelaine.

> We're supposed to go back for a follow up next

> month.

> Are you suggesting that we take another look at the

> chelation

> treatment?

>

> <<<Yes, yes, not trying to be rude but the protocol

> he gave is dangerous. He got the timing of the dmsa

> right, but the amounts are way too high. 1/4 mg per

> for your boy would be 7 mgs dmsa every 4 hours. You

> don't get more metals out with higher doses and

> higher doses can create a lot more unpleasant side

> effects.

>

> Ala is a chelator, must be given every 3 hours. It

> is important to keep a steady level of any chelator

> in the body to prevent the metals/mercury from

> redistributing to vital organs such as the liver or

> the brain. Giving Ala twice a day can make your boy

> worse,or more autistic.

>

> Do some reading in the files section for yourself to

> find out why giving the chelators with regard to

> their half-life, or how long they stay in the body,

> is important.

>

> IMO, find another dr, or just use this one for

> testing and dose the chelators at the low/frequent

> dosing to prevent redistribution yourself.>>>>>

>

> Good luck,

>

> The DMSA dosage was 50 mg every 4 hours.

> Thats the dosage that the doctor prescribed him.

> I'm guessing since

> my son is only 27 lbs he didnt want to give him more

> than that.

>

> We also did all the standard testing. Blood work

> for food

> allergies, stool sample for yeast and hair and uring

> for metal

> toxicity. The doctor based his protocol from the

> results of the

> testing.

>

> I guess I sould also mention that my son is adopted.

> He was born in

> Russia. So we know little about his medical and

> family history.

>

> Thanks

> Lori

>

> > >

> > > Can you tell us what chelator, the dose and

> how frequently you

> > dosed the chelator?

> > >

> > > [ ] Can anyone give me

> advice?

> > >

> > > My 3 year old started chelation in December

> 2005. We did

> about

> > 2

> > > months of treatment, changed his diet and

> continue to give

> him

> > the

> > > standard supplements for autism. (He has not

> been diagnosed)

> > >

> > > I have to say that our son is the same as

> he was when we

> > started

> > > the DAN treatment. He has not changed at

> all. Still

> stimms,

> > little

> > > eye contact, no language ..etc....

> > > The only positive difference is that his

> face and ears are

> no

> > longer

> > > red since we changed his diet.

> > >

> > > I feel hopeless. Is this just not meant to

> be? I want so

> badly

> > for

> > > him to learn and be happy, but it seems

> thats never going to

> > happen.

> > >

> > > The last urine test showed that the lead and

> mercury were

> infact

> > > very low. Low enough that his doctor said

> to stop giving

> him

> > the

> > > DMSA.

> > >

> > > Still no change. I feel like I've tried

> everything to help

> him.

> > > Can anyone give me some advice on what I can

> do from here?

> > >

> > > Thanks

> > > Lori B

> > >

>

=======================================================

> > >

March 30, 2006

-Not an expert here, but it seems that he should be off more than

three days between chelation rounds. And that he should not have ALA

during those days off. His body does not have time to heal in

between rounds. His body needs to have time to remove the freed up

mercury. I think you can dose ALA with DMSA too.

And being from Russia makes him a candidate for mercury vaccines.

But I am sure you already know this, thus the reason you are here.

But definitely read, and print out the protocl from Andy, perhaps

you can suggest using this to your doctor. Kind of feel it out.

Letting him know you want to go slower and make it easier on your

son with low frequent dosing. Sometimes doctors are open to

learning. If not, you may have to do this on your own.

I too do not recommend using the cilantro. Most people who use this

are adults and they do not use it with chemical chelators but alone

as part of a natural detox plan. A small child cannot tell you how

he is feeling well enought to guage if this is making him worse, as

with an adult. And the dosing is questionable as well.

While I do not know your sons whole history only that he is from

Russia, I assume an orphanage. There may be many factors such as

malnourishment early on, no bonding as an infant, more vaccines than

usual, and " maternal history unknown " , etc. I know there are

therapies to help children in those instances. Try not to despair!!

Keep searcing!

-- In , " ldbender " <ldbender@...>

wrote:

>

> ;

>

> Our DAN doctor is in Brentwood, Tennessee. I live about 20 miles

> south. His name is Dr. Chapdelaine.

> We're supposed to go back for a follow up next month.

> Are you suggesting that we take another look at the chelation

> treatment?

> The DMSA dosage was 50 mg every 4 hours.

> Thats the dosage that the doctor prescribed him. I'm guessing

since

> my son is only 27 lbs he didnt want to give him more than that.

>

> We also did all the standard testing. Blood work for food

> allergies, stool sample for yeast and hair and uring for metal

> toxicity. The doctor based his protocol from the results of the

> testing.

>

> I guess I sould also mention that my son is adopted. He was born

in

> Russia. So we know little about his medical and family history.

>

> Thanks

> Lori

>

> > >

> > > Can you tell us what chelator, the dose and how frequently

you

> > dosed the chelator?

> > >

> > > [ ] Can anyone give me advice?

> > >

> > > My 3 year old started chelation in December 2005. We did

> about

> > 2

> > > months of treatment, changed his diet and continue to give

> him

> > the

> > > standard supplements for autism. (He has not been

diagnosed)

> > >

> > > I have to say that our son is the same as he was when we

> > started

> > > the DAN treatment. He has not changed at all. Still

> stimms,

> > little

> > > eye contact, no language ..etc....

> > > The only positive difference is that his face and ears are

> no

> > longer

> > > red since we changed his diet.

> > >

> > > I feel hopeless. Is this just not meant to be? I want so

> badly

> > for

> > > him to learn and be happy, but it seems thats never going

to

> > happen.

> > >

> > > The last urine test showed that the lead and mercury were

> infact

> > > very low. Low enough that his doctor said to stop giving

> him

> > the

> > > DMSA.

> > >

> > > Still no change. I feel like I've tried everything to help

> him.

> > > Can anyone give me some advice on what I can do from here?

> > >

> > > Thanks

> > > Lori B

> > >

> > > =======================================================

> > >

March 30, 2006

Lori,

It is good to have a DAN! doctor in that you don't need to spend

time convincing them to give you the scripts, tests, you might

need. The fact that your DAN! actually told you to dose DMSA is

actually a good thing. But, most of us on this board have learned

that we must research all of the decisions we make for our

children's treatments.

You've found an excellent place to get help. Use ONIBASU to search

the posts. Use the files. Read all the posts you can, even if

they're not applicable now, they likely will be one day. Try to

keep folders that you can copy and paste stuff you think looks

important to you. By doing these things you'll be able to help your

child while your doctor helps you.

Chelating, as many have mentioned, takes a long time for most of our

kids. It is an extremely important step for many of them too. I

think you should resume chelation at a proper protocol. The fact

that your son reacted badly to an improper one is pretty good

evidence that he's toxic. Please check the files section for a file

called supplements. At the end you'll see Andy's recommendations

for supping during chelation: an important aspect of ensuring your

child's safety and comfort during chelation.

Best wishes,

Anita

>

> Thanks .

>

> You Rock! Sounds like you have done allot of research

> on this.

> You're right about the nasty side effects. Right away

> I noticed my son getting very sleepy and fussy all the

> time while he was on DMSA. He also regressed a

> little. Lost the ability to say " baba, and Papa " .

> I will definitely ask about this when we go back to

> see the doctor. As far as finding another DAN doctor,

> he is the only one on the list for Tennessee.

>

> Lori

>

March 31, 2006

Many were also double vaccinated.

S S

<tt>