Chelation progress - Long story

[Guest guest]

Hurray for Cameron! You go guy!

Your comments of:

> As I mentioned in the other post, he still has deficits in language ( it

> appears he doesn't hear the sounds of words accurately

>

make me think he might benefit more from The Listening Program than AIT since

TLP tends to work more on auditory processing and sound discrimination.

Their newer Speech & Language CD is especially good at this -- kind of like a

magical language pill for many kids.

Gaylen

[Guest guest]

This is a great story. Is there any way to get a handle on how common a

result of six months of chelation this is. We have done more than six months

of chelation and haven't gotten anything near this type of result but I still

believe the chelation helps and continue to do it. What percentage of the

children take off like this after starting chelation and what is different

about these children and those who do not respond as well?

Ken Sokolski

[Guest guest]

Andy, you wrote: << It would be very nice if sometime at you

convenience you could post a really good, thorough description of the

exact type and manner of progress he made due to chelation.>>

When we started chelation Cameron had not yet turned 7 ( September

2000 ) and we already had him on the GFCF diet ( since that April )

and had tried secretin ( 1998) , Megson's protocol ( 1999 ) and

Rimland's nutritional therapy with DMG, B6 and the like ( 1995-1998).

We had also worked with hippotherapy since 1998, SI therapy for 18

months through 1999, speech therapy which ended in 1999, AIT etc,

etc, etc . Nothing much had worked really well, but all helped a

little bit. And please understand that we are speaking

of a child who was dx as very LF autistic with a DTP reaction which

hospitalized him in december 1993 and then after 1994 no language

whatsoever after 12 months of age and the MMR ( and resulting

encephalitis ).

His first real words after this long silence were in December of 1998

with secretin - but lasted a whopping 4 hours and not the 6 weeks

we were promised. It wasn't much but it made me understand that

whatever there was that had caused his autism was something fixable .

Cam progressed in inches throughout all these therapies but

nonetheless he progressed with each thing we tried. Nothing was a

" flop " but nothing was terrific either .And then we tried chelation

therapy.

We initially had gone to a physician who utilized the DAN! protocol

(8 hours and 200 mg dosing ). This turned out to be a HUGE mistake

for our son. It resulted in Cameron flailing at the waist ,

convulsing on occasion and in short left us

running to the ER and getting XRays etc with no help from anyone in

our home town as the doctor we had used was from out of state .

Thanks to Drs. Deb and Andy, this time, prior to restarting I had

been advised to boost his immune system and improve his exit

pathways which we did for three solid months before we restarted and

of

course we switched to a much smaller dose and the shorter dosing

schedule

of every 4 hours.

In January 2001 we started once more and we never looked back,

although

I have to say we were extremely tense about doing it again.

The first thing we noticed is that his eye contact was much more

normal and then came the social skills improvements ( he was always a

little more social than most but he still had many deficits ). His

ability to focus for longer periods of time came next and with all

this ( in the first 6 weeks of 2001 ) he had mastered his goals for

the rest of the year from an IEP that had just been put together in

mid Decemeber of 2000 !

The school called us mid Feb and asked for an ARD as Cam's teachers

said he was learning so fast that we needed more and harder goals for

him. I had told them nothing of what we were doing so this was music

to my ears and proof positive that this was indeed something that was

truly benefitting Cam . This was the MOST effective therpay we had

encountered to date.

After February the school would send complementary notes home about

his new found

imaginary play, a girlfriend or two, his initiating play with other

NT children, his

ability to sit in class and focus for an hour on one topic, his new

ability to participate in these classes, and so on.

He also started to sing for the first time. He was 7 and we had never

heard him sing before. Then came the CDSA results which showed the 4+

yeast was down to nothing without any yeast treatments whatsoever !!

And this after we had tried everything including killer doses of

Diflucan and others for years....

And his chymotryspin, which had been negligeable was now all of a

sudden in the middle of normal ref range.

Fatty acids were normal and in fact his results had only two words in

the description and those were ' no sensitivities ' ... yikes.

In July 2001 we were at church and having a nice fellowship lunch and

what did

we see but our little Cameron sneaking a bite of the non GFCF lasagna

.... and we watched and freaked out .

We ran home as fast as we could after that but it had been 30 minutes

sionce the infraction, but we gave him his enzymes and

sat back and waited for behaviors we could attribute to his GFCF diet

infringement . There were none. Nothing at all !!!

And to this day, with the exception of high phenolic foods ( for

which we now have No-Fenol ) we have seen no regression from eating

regular foods ever again. We still use enzymes with larger meals but

he is just fine wihtout them.

That was probably one of the biggest changes in terms of family

dynamics as we could go out and eat " real " food for a change and we

celebrated our good fortune by hitting Disneyworld that August.

Much to our surprise,he flew there like a champ, stayed dry at night

in the hotel ( which is another side effect for us of chelation ...

no more accidents ever )and was able to stand in long lines when we

needed to without getting upset or impatient ( although I have to

give kudos to Disney for their disability passes as for the most part

we had few lines to wait in ).

So between January 1,2001 and August 31, 2001 we had seen him

completely toilet trained with no accidents, eating regular foods,

having a normal gut and a pancreas which produces enzymes, no more

overabundance of yeast.

His sleep problems are disappearing, his ability to focus for long

periods of time has improved, imaginary play is totally new with

chelation, initiating play with other children , no more fear of

heights when climbing ladders and no more depth perception issues

when walking up or down stairs, no more severe sun sensitivity or

severe heat dysregulation , improved eye

sight ( went from 2.25 down to 1.5 of normal ),and the eyesight has

brought with it better equilibrium and fewer accidents from his

clumsiness. And finally his receptive and expressive language have

really blossomed .

Since August 31 we have seen no loss of any of the above and new

things such as his handwriting and reading abilities which have

changed

immensely for the better and his hypotonia which has been reduced

( although it is still apparentto us ) .

His teacher has

told me that Cameron could very easily fit into ANY regular ed

classroom with minimal assistance now . He is much calmer and works

pretty independently .

Please remember that I told you that he was dx as SEVERE and LF.

Today was Field Day at his school and he participated fully and one

of the aides

told me that the principal had been watching Cameron and was so

shocked that not only had he participated so well but so fully and

without strain or stress - and she told her that it was amazing how

well he had mainstreamed. Hurray !

And all this since January 2001.

As I mentioned in the other post, he still has deficits in language

( it appears he doesn't hear the sounds of words accurately )and he

still has muscle weakness that others do not have, but for the most

part we have a completely NEW little child with few remaining

problems ( and those we hope to address with hyperbaric oxygen

therapy ) .

I hope that answers most the question you asked Andy, about

the detail of how and what was attributable to chelation. In my

opinion almost all his serious accomplishments and excellent health

reports to date are due to chelation. He had started improving but

had never made it past first base with any of the other therapies.

This was a huge

change for us in every facet of his and our life as a family.

Jeannie

[Guest guest]

> This is a great story. Is there any way to get a handle on how

common a

> result of six months of chelation this is. We have done more than

six months

> of chelation and haven't gotten anything near this type of result

but I still

> believe the chelation helps and continue to do it. What percentage

of the

> children take off like this after starting chelation and what is

different

> about these children and those who do not respond as well?

> Ken Sokolski

Dear Dr. Ken,

Please let me know if you figure it out, I would love to understand

too! As I would with whether other treatments are going to help, and

how much.

Aside from the factors like some kids being misdiagnosed and chelated

when that isn't what they need, and some being chelated improperly,

there is still quite a bit of variability that is not well explained.

One of the thing that happens with adults is that a sizeable fraction

of the " toxic " people have intoxication + something else somewhat

unusual that also happened to them (e. g. closed head trauma), and the

combionation reall zapped them. Chelating them only treats one thing

and they may respond less fully than those who are just

[Guest guest]

Jeannie! Thanks for sharing! How wonderful for you and you're family!

Gives us all hope and reassurance as we begin our chelation adventure!

Please keep us updated on how the HBOT turns out! God Bless! Sharon

[Guest guest]

YEAH for you and you family!!!

I have a question about his yeast... what yeast treatments, if any, were you

giving him during chelation? And, what doses of DMSA/ALA were you using

initially and how did you increase them?

THANK YOU!

Sue

[ ] Chelation progress - Long story

Andy, you wrote: << It would be very nice if sometime at you

convenience you could post a really good, thorough description of the

exact type and manner of progress he made due to chelation.>>

When we started chelation Cameron had not yet turned 7 ( September

2000 ) and we already had him on the GFCF diet ( since that April )

and had tried secretin ( 1998) , Megson's protocol ( 1999 ) and

Rimland's nutritional therapy with DMG, B6 and the like ( 1995-1998).

We had also worked with hippotherapy since 1998, SI therapy for 18

months through 1999, speech therapy which ended in 1999, AIT etc,

etc, etc . Nothing much had worked really well, but all helped a

little bit. And please understand that we are speaking

of a child who was dx as very LF autistic with a DTP reaction which

hospitalized him in december 1993 and then after 1994 no language

whatsoever after 12 months of age and the MMR ( and resulting

encephalitis ).

His first real words after this long silence were in December of 1998

with secretin - but lasted a whopping 4 hours and not the 6 weeks

we were promised. It wasn't much but it made me understand that

whatever there was that had caused his autism was something fixable .

Cam progressed in inches throughout all these therapies but

nonetheless he progressed with each thing we tried. Nothing was a

" flop " but nothing was terrific either .And then we tried chelation

therapy.

We initially had gone to a physician who utilized the DAN! protocol

(8 hours and 200 mg dosing ). This turned out to be a HUGE mistake

for our son. It resulted in Cameron flailing at the waist ,

convulsing on occasion and in short left us

running to the ER and getting XRays etc with no help from anyone in

our home town as the doctor we had used was from out of state .

Thanks to Drs. Deb and Andy, this time, prior to restarting I had

been advised to boost his immune system and improve his exit

pathways which we did for three solid months before we restarted and

of

course we switched to a much smaller dose and the shorter dosing

schedule

of every 4 hours.

In January 2001 we started once more and we never looked back,

although

I have to say we were extremely tense about doing it again.

The first thing we noticed is that his eye contact was much more

normal and then came the social skills improvements ( he was always a

little more social than most but he still had many deficits ). His

ability to focus for longer periods of time came next and with all

this ( in the first 6 weeks of 2001 ) he had mastered his goals for

the rest of the year from an IEP that had just been put together in

mid Decemeber of 2000 !

The school called us mid Feb and asked for an ARD as Cam's teachers

said he was learning so fast that we needed more and harder goals for

him. I had told them nothing of what we were doing so this was music

to my ears and proof positive that this was indeed something that was

truly benefitting Cam . This was the MOST effective therpay we had

encountered to date.

After February the school would send complementary notes home about

his new found

imaginary play, a girlfriend or two, his initiating play with other

NT children, his

ability to sit in class and focus for an hour on one topic, his new

ability to participate in these classes, and so on.

He also started to sing for the first time. He was 7 and we had never

heard him sing before. Then came the CDSA results which showed the 4+

yeast was down to nothing without any yeast treatments whatsoever !!

And this after we had tried everything including killer doses of

Diflucan and others for years....

And his chymotryspin, which had been negligeable was now all of a

sudden in the middle of normal ref range.

Fatty acids were normal and in fact his results had only two words in

the description and those were ' no sensitivities ' ... yikes.

In July 2001 we were at church and having a nice fellowship lunch and

what did

we see but our little Cameron sneaking a bite of the non GFCF lasagna

.... and we watched and freaked out .

We ran home as fast as we could after that but it had been 30 minutes

sionce the infraction, but we gave him his enzymes and

sat back and waited for behaviors we could attribute to his GFCF diet

infringement . There were none. Nothing at all !!!

And to this day, with the exception of high phenolic foods ( for

which we now have No-Fenol ) we have seen no regression from eating

regular foods ever again. We still use enzymes with larger meals but

he is just fine wihtout them.

That was probably one of the biggest changes in terms of family

dynamics as we could go out and eat " real " food for a change and we

celebrated our good fortune by hitting Disneyworld that August.

Much to our surprise,he flew there like a champ, stayed dry at night

in the hotel ( which is another side effect for us of chelation ...

no more accidents ever )and was able to stand in long lines when we

needed to without getting upset or impatient ( although I have to

give kudos to Disney for their disability passes as for the most part

we had few lines to wait in ).

So between January 1,2001 and August 31, 2001 we had seen him

completely toilet trained with no accidents, eating regular foods,

having a normal gut and a pancreas which produces enzymes, no more

overabundance of yeast.

His sleep problems are disappearing, his ability to focus for long

periods of time has improved, imaginary play is totally new with

chelation, initiating play with other children , no more fear of

heights when climbing ladders and no more depth perception issues

when walking up or down stairs, no more severe sun sensitivity or

severe heat dysregulation , improved eye

sight ( went from 2.25 down to 1.5 of normal ),and the eyesight has

brought with it better equilibrium and fewer accidents from his

clumsiness. And finally his receptive and expressive language have

really blossomed .

Since August 31 we have seen no loss of any of the above and new

things such as his handwriting and reading abilities which have

changed

immensely for the better and his hypotonia which has been reduced

( although it is still apparentto us ) .

His teacher has

told me that Cameron could very easily fit into ANY regular ed

classroom with minimal assistance now . He is much calmer and works

pretty independently .

Please remember that I told you that he was dx as SEVERE and LF.

Today was Field Day at his school and he participated fully and one

of the aides

told me that the principal had been watching Cameron and was so

shocked that not only had he participated so well but so fully and

without strain or stress - and she told her that it was amazing how

well he had mainstreamed. Hurray !

And all this since January 2001.

As I mentioned in the other post, he still has deficits in language

( it appears he doesn't hear the sounds of words accurately )and he

still has muscle weakness that others do not have, but for the most

part we have a completely NEW little child with few remaining

problems ( and those we hope to address with hyperbaric oxygen

therapy ) .

I hope that answers most the question you asked Andy, about

the detail of how and what was attributable to chelation. In my

opinion almost all his serious accomplishments and excellent health

reports to date are due to chelation. He had started improving but

had never made it past first base with any of the other therapies.

This was a huge

change for us in every facet of his and our life as a family.

Jeannie

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

[Guest guest]

Hi Sue,

Well, here's the kicker. we did NO yeast treatments during chelation.

It just disappeared because we chelated maybe ( I am guessing )?

Prior to that we had done every type of yeast treatment and known to

medicine including doses of Diflucan that were so strong that my

insurance company initially refused to allow it and only upon my

doctor's dissertation to them about why it was needed did they allow

it. The yeast disappeared for a short time after that round of drug

and following round a month later, only to return with a vengeance

afterward.

Chelation with DMSA only ( Phase One ) APPEARS to have made it go

away. Don't know why !Wish I did.

Jeannie

> YEAH for you and you family!!!

>

> I have a question about his yeast... what yeast treatments, if any,

were you

> giving him during chelation? And, what doses of DMSA/ALA were you

using

> initially and how did you increase them?

>

> THANK YOU!

>

> Sue

>

[Guest guest]

Thanks Andy,

I agree with your thinking. In some children the heavy metals may be just one

factor and in others it may be the only factor. It may be that mercury

toxicity leads to a cascade of problems such as immune leading to infections

leading to leaky gut leading to nutritional deficiencies. In some cases

removing the mercury completely and rapidly reverses the cascade but in

others residual problems remain which need to be treated separately. In

either case removing the mercury and other toxic metals appears to be a step

which needs to be taken as it does not seem that the metal problem is at the

end of a cascade. By the way, we continue to get better results with every

3-4 hour dosing of DMSA 80 mg/ALA 30 mg (86 pound child) but by day 2 he is

really getting irritable and labile. His appetite and sleep remain good

during chelation though (in fact he often takes a nap during the day) and

what I generally do is decrease the dose by about 30% on Sunday so that he is

ready to go back to school by Monday. Our doctor said we should be measuring

urine metals (8 hour test by Doctor's Data) every 2-3 rounds to make sure

that something is coming out. We used to do that almost monthly but I stopped

this due to expense. During that time, the urines did have mercury, lead,

cadmium, tin, alluminum, uranium, nickel, and arsenic in them. What is

reasonable as far as lab tests for following progress in these kids?

Also, there was a question on using S.O.D. (Super Oxide Dismutase)

previously. We use a pollen supplement called Polbax (Pharmacia Upjohn) which

contains S.O.D. and a balance of minerals and vitamins. I had tried to raise

my son's RBC zinc level for years with other supplements without success.

Apparently the S.O.D. helps deliver micronutrients to the cell and after two

months on this supplement, all of his RBC minerals were within the normal

range for the first time. The supplement is a little expensive but when you

add up the cost of all of the other supplements, it comes out about the same.

It has even been used to treat women with osteoporosis due to its ability to

deliver calcium. It also helps as a free radical scavenger.

One last thing. I know at various times the effect of mercury and other heavy

metals on neurotransmitters has been discussed. My son has very low platelt

serotonin, elevated blood serotonin, and serotonin antibodies. With his

obsessive compulsive behavior, there is no doubt he is very serotonin

deficient. His plasma tryptophan is also very low. In reading posts from

parents whose children have improved on chelation, it appears that behaviors

such as socialization and OCD are improving without the addition of SSRI's or

other medication. Remind me how mercury toxicity might affect the serotonin

system and could it also be related to the serotonin antibodies so common in

autism, fibromyalgia, and other autoimmune conditions?

Thanks

Ken Sokolski

[Guest guest]

Jeannie,

Thank you so much for sharing your story with us. I

cried as I read it. My son is also severe. Your

story fills me with hope and gives me the courage to

begin chelation.

Congratulations, I'm thrilled for you and your family

and for all the wonderful people on this list who give

hope and help to others!!!

---

__________________________________________________

[Guest guest]

>Thanks to Drs. Deb and Andy, this time, prior to restarting I had

been advised to boost his immune system and improve his exit

pathways which we did for three solid months before we restarted and

What do you mean by improving his exit pathways? Do you mean fixing

constipation? This is something I battle with in my son. I haven't started

chelation yet but am anxious to start. I feel like I need to find something

that works good for his constipation though. Otherwise, I feel he'll just

reabsorb everything again.

Diane