Re: Alternative methods

[Guest guest]

wow! pretty strong words. i still dont believe asking questions and

comparing protocols is a bad thing. i havent seen anything yet that said dr g

is a

bad man. i highly respect him and thank him for what he has done for the

children.

like other posts have said, every child is different and what works for some

may not for others. body chemistry and things...

i'm ALWAYS researching and reading and looking at what is currently being

used out there. just how i am. vicki in los angeles

[Guest guest]

think i'll bow out of this list for a while.....or, just do pvt emails. i'm

already stressed out about everything (fighting school dist, regional center,

insurance, etc., etc.) i really cant stand much more. take care all......vicki

in los angeles

[Guest guest]

please remove me from the list. Thank you.

[Guest guest]

>

> You guys really crack me up… Do you think Dr. G doesn't read. Do

you

> really believe if you do not tell him what you give your child he

> will not find out. These lists are public!!!

> I can't tell you how many people do what they want but not if they

> want to help their child. Dr. G spent years working with a

> supplement company pharmaceutical grade the problem is most of the

> stuff does not make it past the liver. The impurities in some of

> these products have caused deaths in other countries forcing some

> supplements to be taken off the market for the wrong reasons. If

you

> truly believe he is being stubborn you are a fool! He knows what

> hurts the children….

> Be warned… He is starting to discharge patients who he finds out

do

> not comply

>

> Elyse Goldberg

i applaud any wife who stands up for her husband.

to call these desperate parents fools is despicable and you owe them

an apology.

i need to inform you that it is actually ok for people to disagree.

on this list i know there is strict censorship, by your words

implying that dr g and his people are spying here on those who dare

help there children in different ways is way out of bounds.

we dismissed dr g and i know others who are disillusioned who either

have done so or considering to do so. to have a dr no matter how

well intentioned refuse to even entertain the notion of something

else is doing a disservice.

this closed mindeedness im sure is out of frustration and simply a

personality flaw.

some children are helped on nids some are not. no one has all the

answers right now---we all need to keep an open mind and see what

works for our kids.

just becazuse there are a lot of dangerous and worhtless meds does

not mean they are all worthless. there are many doctors who are as

qualified and in some cases much more so who feel dr g is wrong.

one who comes to mind is the eminent researcher dr singh who

strongly disagrees with dr g.

lets stop threatening people that they will be found out because

they disagree with dr g.

in our case dr g totally misdiagnosed our son fortunately we found a

neurologist who has helped my son pretty much recover.

[Guest guest]

" fortunately we found a

neurologist who has helped my son pretty much recover. " E me privately if you

wish.

Recover? More details please.

Rose

Re: Alternative methods

>

> You guys really crack me up. Do you think Dr. G doesn't read. Do

you

> really believe if you do not tell him what you give your child he

> will not find out. These lists are public!!!

> I can't tell you how many people do what they want but not if they

> want to help their child. Dr. G spent years working with a

> supplement company pharmaceutical grade the problem is most of the

> stuff does not make it past the liver. The impurities in some of

> these products have caused deaths in other countries forcing some

> supplements to be taken off the market for the wrong reasons. If

you

> truly believe he is being stubborn you are a fool! He knows what

> hurts the children..

> Be warned. He is starting to discharge patients who he finds out

do

> not comply

>

> Elyse Goldberg

i applaud any wife who stands up for her husband.

to call these desperate parents fools is despicable and you owe them

an apology.

i need to inform you that it is actually ok for people to disagree.

on this list i know there is strict censorship, by your words

implying that dr g and his people are spying here on those who dare

help there children in different ways is way out of bounds.

we dismissed dr g and i know others who are disillusioned who either

have done so or considering to do so. to have a dr no matter how

well intentioned refuse to even entertain the notion of something

else is doing a disservice.

this closed mindeedness im sure is out of frustration and simply a

personality flaw.

some children are helped on nids some are not. no one has all the

answers right now---we all need to keep an open mind and see what

works for our kids.

just becazuse there are a lot of dangerous and worhtless meds does

not mean they are all worthless. there are many doctors who are as

qualified and in some cases much more so who feel dr g is wrong.

one who comes to mind is the eminent researcher dr singh who

strongly disagrees with dr g.

lets stop threatening people that they will be found out because

they disagree with dr g.

in our case dr g totally misdiagnosed our son fortunately we found a

neurologist who has helped my son pretty much recover.

Responsibility for the content of this message lies strictly with

the original author(s), and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

Holy cow......big brother is on our humble list!!

How incredibly insulting to imply that parents who don't see good results

with Dr. G (and far from everyone does)

are doing their children a disservice by keeping an open mind. may be

the answer, but obviously it is not a complete treatment at this point for

every child....if it was, my son wouldn't be running circles around the

couch right now while talking to himself about chainsaws and trash trucks.

(lol, gotta love him)

I do believe in as the core reason for my son's problems. I also

believe that many treatments are harmful, while others may be helpful. Thus

far I have not kept anything from Dr. G., in an honest effort to facilitate

my son's recovery. However, if he disagrees with something, I expect it to

be done with respect and good reasoning, not criticism, threats, and blame.

That's just good business and good manners.. As his wife, you are speaking

for him and IMO, making him look incredibly bad. If any criticism of or

disagreement with the protocol is something that is not allowed on this

list, that should be disclosed when one signs up for the listserve.

Becky

Re: Re: Alternative methods

> wow! pretty strong words. i still dont believe asking questions and

> comparing protocols is a bad thing. i havent seen anything yet that said

dr g is a

> bad man. i highly respect him and thank him for what he has done for the

> children.

>

> like other posts have said, every child is different and what works for

some

> may not for others. body chemistry and things...

>

> i'm ALWAYS researching and reading and looking at what is currently

being

> used out there. just how i am. vicki in los angeles

>

>

>

[Guest guest]

<<<If any criticism of or

disagreement with the protocol is something that is not allowed

on this

list, that should be disclosed when one signs up for the

listserve.<<<

At the risk of being flamed -- I don't think Elyse's post was about

people questioning or disagreeing...I think the issue here is that

there have been a few posts which have encouraged people whose kids

are currently the protocol to just go ahead and add things

which not on the protocol -- *without telling Dr. Goldberg*. IMO,

that's just a dangerous thing to do. Many of these suppliments and

other substances might be okay on their own, but they can actually

interfere or interact badly with the drugs he is prescribing for

your children and potentially cause harm. It's one thing to

disagree (you can always find another doctor), quite another to

willfully go against your doctor's instructions.

[Guest guest]

I agree

Re: Re: Alternative methods

think i'll bow out of this list for a while.....or, just do pvt emails. i'm

already stressed out about everything (fighting school dist, regional

center,

insurance, etc., etc.) i really cant stand much more. take care

all......vicki

in los angeles

[Guest guest]

QUOTE:

.... I don't think Elyse's post was about people questioning or disagreeing...I

think the issue here is that there have been a few posts which have encouraged

people whose kids are currently the protocol to just go ahead and add

things which not on the protocol -- *without telling Dr. Goldberg*. ...

___________

I agree.

Though I do see how it could be taken the wrong way.

Let's admit- we're on this list because we (or someone close to us) suffer(s)

from immune-related disorders/diseases and we are passionate about finding

help/a cure.

Everyone's passion comes out in different ways (i.e. sarcastic, harsh, swooning,

joyfully, etc) at different times. Sometimes you can see the curdled ooze

dripping from the screen and other times you can picture the list member

floating away from his/her keyboard on a white fluffy cloud as soon as the send

button is clicked.

I prefer the gravity-defying posts, but I learn from the sticky one's, too.

-

Reality lies beyond the horizon...

Wonderwegian

[Guest guest]

..

> to call these desperate parents fools is despicable and you owe

them

> an apology.

>

> i need to inform you that it is actually ok for people to disagree.

> on this list i know there is strict censorship, by your words

> implying that dr g and his people are spying here on those who

dare

> help there children in different ways is way out of bounds.

Jeff,

I agree with most of the things you said.....the censorship part?

If expecting everyone to act in a civil manner without belittling or

attacking people you disagree with is strict censorship...so be it.

Hopefully the response to this post will make it clear that treating

people this way is not acceptable nor wanted. I hope that everyone

will hang in there and not let this ruin the list we've devoted so

much time to.

Most parents have enough stress in their lives and want to be able

to ask questions without the fear of being attacked or threatened.

It would be sad if someone took advantage of the situation in a

negative way.

My question would be why this is happening in the first place. Are

parents comfortable asking questions and satisfied with the

answers? If not, then what does someone need to do to change things.

I'd like to see something positive come out of all this.

[Guest guest]

A reminder, the G in Dr G doesn't stand for God. Though it may stand for

good, or maybe Getting There, as is not the complete picture for every

ASD person. The concept and theory behind continues to gain scientific

support, and the treatment based on this science has helped many, but it has

also failed to help. Lets all keep sharing the successful and unsuccessful

stories of all kinds. There is no reason to become a zealot for any one

approach. Again, no one knows for sure what will work for any individual ASD

child.

Ray

Re: Alternative methods

>

> You guys really crack me up… Do you think Dr. G doesn't read. Do

you

> really believe if you do not tell him what you give your child he

> will not find out. These lists are public!!!

> I can't tell you how many people do what they want but not if they

> want to help their child. Dr. G spent years working with a

> supplement company pharmaceutical grade the problem is most of the

> stuff does not make it past the liver. The impurities in some of

> these products have caused deaths in other countries forcing some

> supplements to be taken off the market for the wrong reasons. If

you

> truly believe he is being stubborn you are a fool! He knows what

> hurts the children….

> Be warned… He is starting to discharge patients who he finds out

do

> not comply

>

> Elyse Goldberg

i applaud any wife who stands up for her husband.

to call these desperate parents fools is despicable and you owe them

an apology.

i need to inform you that it is actually ok for people to disagree.

on this list i know there is strict censorship, by your words

implying that dr g and his people are spying here on those who dare

help there children in different ways is way out of bounds.

we dismissed dr g and i know others who are disillusioned who either

have done so or considering to do so. to have a dr no matter how

well intentioned refuse to even entertain the notion of something

else is doing a disservice.

this closed mindeedness im sure is out of frustration and simply a

personality flaw.

some children are helped on nids some are not. no one has all the

answers right now---we all need to keep an open mind and see what

works for our kids.

just becazuse there are a lot of dangerous and worhtless meds does

not mean they are all worthless. there are many doctors who are as

qualified and in some cases much more so who feel dr g is wrong.

one who comes to mind is the eminent researcher dr singh who

strongly disagrees with dr g.

lets stop threatening people that they will be found out because

they disagree with dr g.

in our case dr g totally misdiagnosed our son fortunately we found a

neurologist who has helped my son pretty much recover.

Responsibility for the content of this message lies strictly with

the original author(s), and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

I think Stefanie made an excellent point. This list is intended to discuss

the protocol. When it veers onto other topics without a clear indication

that it is off topic, it may give the false impression that these things are

part of or that Dr. G endorses them. So what might appear as " censorship "

of non--related topics may actually be the moderators' intention of

keeping the list on topic.

However, I think it is important to discuss both the successes and

frustrations of those using the path, along with some clear reasons why

certain

other treatments/supplements/etc are demanded to be avoided when doing the

protocol.

I think Cheryl asked a very good question:

<<My question would be why this is happening in the first place. Are

parents comfortable asking questions and satisfied with the

answers? If not, then what does someone need to do to change things>>

There does seem to be an overwhelming frustration among parents who feel they

are not getting clear enough answers or are being belittled when they want to

fully explore why a certain other treatment would or would not be appropriate

for their child.

I think exploring various " alternative " treatments and directly addressing

many of the specific questions as to why they would not be appropriate as part

of the protocol would go a long way in boosting parents' confidence with and

understanding the full picture, even during the times of slow or no obvious

progress. It would also help those considering to better understand why

so many things thought to be helpful for autistic children are not allowed on

the protocol.

Cheryl and a few others have done an excellent job of posting studies

supporting some beliefs against various interventions. I think more of

this,

especially coming directly from Dr. Goldberg's office, would help parents better

understand his reasons for demanding that patients do not use certain things

and help parents feel more comfortable passing on these other things even

during times of slow progress.

Gaylen

[Guest guest]

Hi all,

I have been quietly lurking on the list and have to say I agree with this

post from donnaaron 1 (below). Please excuse this long email.. I have a few

thoughts to share.

I think we have a respect issue here. The list was originally set up

for parents on the protocol, or parents interested in the protocol to

share ideas, experiences etc. It was set up on behalf of Dr. Goldberg by a

group of parents..who happen to be moderators of this list. (I am not a

moderator by the way but know some of those who are). Our son

has been a patient of Dr. Goldberg's for almost 5 years and we have seen

great improvement. However, as Dr. Goldberg will freely admit, it is not an

easy road. It's not as though he can prescribe a few pills and suddenly a

child is better. Along with the protocol which addresses the immune

system, you also need to go through some very intensive rehabilitation - to

rebuild the pathways in the brain...as the kids have lost years in

development. This takes time and is not something that can be done with a

few pills. In addition, Dr. Goldberg is, by his own admission, is working

with " less than ideal " medications....they are safe but generally will not

get instant results. (Awaiting further development of immune

modulators...long story). Furthermore, every child is different.....the

underlying medical issue and immune system of each child is different....and

some children are more sensitive and " trickier " than others. Parents who

think they will try the protocol for a few months, even a year or two and

suddenly have a perfectly normal child are kidding themselves. However, we

know parents whose kids are now completely normalized or close to it...as a

result of plus behavioural/educational interventions plus speech

therapy. Our son is much, much better and improving all the time....we are

convinced he would have been a total basket case without Dr. Goldberg.

The problem I have with all of this correspondence is this. Dr. Goldberg is

firmly of the view that mega doses of supplements and chelation are both

very dangerous practices and that there is no medical evidence to suggest

that the potential gains are worth the risk one takes when one chelates or

gives ones child supplements. He has said this very publicly from day 1 so

this should come as no surprise to anyone. So given the fact that this list

is a list, is it not extremely insensitive and inappropriate to

blatantly post pro-chelation and pro-supplement views? And those who are

posting opinions saying supplements and chelation are good or might be

good...has it occurred to them that this is a list and these views are

in total opposition to what is all about? Of course we should have

free speech....but perhaps those who want to go try " alternative methods "

should find a more appropriate forum for doing so. Parents are under no

obligation to go with the protocol, but it seems very inappropriate and

foolish to follow medical advice from a medical practitioner and then

blatantly disregard the direction given and then flaunt it in a forum which

was originally conceived by that doctor? I think this is very

disrespectful. Its no different to going to a lawyer for legal advice then

disregarding what he says and flaunting it to other clients of that lawyer

and the lawyer himself. Everyone also needs to understand why Dr. Goldberg

and Elyse feel so strongly about this. The medications prescribed are FDA

approved as completely safe....and to ensure total safety the kids have to

do blood tests each month to ensure no damage is being done to their livers,

etc. Whereas there is a considerable body of evidence to suggest that

chelation and supplements don't help and are also not proven to be safe and

in fact could do huge damage. And yet many of the people posting the pro

chelation and pro supplement views are not medically qualified and have not

spent the years looking at these issues that Dr. Goldberg has. I have been

quietly reading a lot of the chelation stuff lately and have been horrified

that parents are prepared to " roll the dice " and take such risks....Dr.

Goldberg who is a qualified and experienced medical practitioner must be

very upset reading these posts....I thought Elyse's post was pretty

restrained given the circumstances. It must break their hearts to read

about parents who are putting their kids at risk in this way.

By the way I don't find Dr. Goldberg at all argumentative...but of course he

has strong views..that's his job. He does listen to us, answer all our

questions, and sometimes when we suggest we want to try something he will

often agree with us/give us benefit of the doubt. But I have never found

him to be unreasonable. This is probably because we treat him with a degree

of respect and recognize that he has a medical degree and years and years of

experience and a very strong track record (whereas we do not). So again,

nobody on this list is obliged to follow the protocol...and yes, let's

share views and be open minded to ideas......but for those who blatantly

want to flaunt anti- treatments...perhaps there is a more appropriate

forum to do this than the list? I'm sure the chelation people must

have their own site somewhere.

No doubt I will be flamed for this but just had to say it. And again,

please re-read the post below from Donnaaron.

Stefanie (Singapore)

Re: Alternative methods

<<<If any criticism of or

disagreement with the protocol is something that is not allowed

on this

list, that should be disclosed when one signs up for the

listserve.<<<

At the risk of being flamed -- I don't think Elyse's post was about

people questioning or disagreeing...I think the issue here is that

there have been a few posts which have encouraged people whose kids

are currently the protocol to just go ahead and add things

which not on the protocol -- *without telling Dr. Goldberg*. IMO,

that's just a dangerous thing to do. Many of these suppliments and

other substances might be okay on their own, but they can actually

interfere or interact badly with the drugs he is prescribing for

your children and potentially cause harm. It's one thing to

disagree (you can always find another doctor), quite another to

willfully go against your doctor's instructions.

Responsibility for the content of this message lies strictly with

the original author(s), and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

Very, very well said. Thank you. Barb

--- R M <rmwilson@...> wrote:

> Hi all,

>

> I have been quietly lurking on the list and have to

> say I agree with this

> post from donnaaron 1 (below). Please excuse this

> long email.. I have a few

> thoughts to share.

>

> I think we have a respect issue here. The list

> was originally set up

> for parents on the protocol, or parents

> interested in the protocol to

> share ideas, experiences etc. It was set up on

> behalf of Dr. Goldberg by a

> group of parents..who happen to be moderators of

> this list. (I am not a

> moderator by the way but know some of those who

> are). Our son

> has been a patient of Dr. Goldberg's for almost 5

> years and we have seen

> great improvement. However, as Dr. Goldberg will

> freely admit, it is not an

> easy road. It's not as though he can prescribe a few

> pills and suddenly a

> child is better. Along with the protocol which

> addresses the immune

> system, you also need to go through some very

> intensive rehabilitation - to

> rebuild the pathways in the brain...as the kids have

> lost years in

> development. This takes time and is not something

> that can be done with a

> few pills. In addition, Dr. Goldberg is, by his own

> admission, is working

> with " less than ideal " medications....they are safe

> but generally will not

> get instant results. (Awaiting further development

> of immune

> modulators...long story). Furthermore, every child

> is different.....the

> underlying medical issue and immune system of each

> child is different....and

> some children are more sensitive and " trickier " than

> others. Parents who

> think they will try the protocol for a few months,

> even a year or two and

> suddenly have a perfectly normal child are kidding

> themselves. However, we

> know parents whose kids are now completely

> normalized or close to it...as a

> result of plus behavioural/educational

> interventions plus speech

> therapy. Our son is much, much better and improving

> all the time....we are

> convinced he would have been a total basket case

> without Dr. Goldberg.

>

> The problem I have with all of this correspondence

> is this. Dr. Goldberg is

> firmly of the view that mega doses of supplements

> and chelation are both

> very dangerous practices and that there is no

> medical evidence to suggest

> that the potential gains are worth the risk one

> takes when one chelates or

> gives ones child supplements. He has said this very

> publicly from day 1 so

> this should come as no surprise to anyone. So given

> the fact that this list

> is a list, is it not extremely insensitive and

> inappropriate to

> blatantly post pro-chelation and pro-supplement

> views? And those who are

> posting opinions saying supplements and chelation

> are good or might be

> good...has it occurred to them that this is a

> list and these views are

> in total opposition to what is all about? Of

> course we should have

> free speech....but perhaps those who want to go try

> " alternative methods "

> should find a more appropriate forum for doing so.

> Parents are under no

> obligation to go with the protocol, but it

> seems very inappropriate and

> foolish to follow medical advice from a medical

> practitioner and then

> blatantly disregard the direction given and then

> flaunt it in a forum which

> was originally conceived by that doctor? I think

> this is very

> disrespectful. Its no different to going to a lawyer

> for legal advice then

> disregarding what he says and flaunting it to other

> clients of that lawyer

> and the lawyer himself. Everyone also needs to

> understand why Dr. Goldberg

> and Elyse feel so strongly about this. The

> medications prescribed are FDA

> approved as completely safe....and to ensure total

> safety the kids have to

> do blood tests each month to ensure no damage is

> being done to their livers,

> etc. Whereas there is a considerable body of

> evidence to suggest that

> chelation and supplements don't help and are also

> not proven to be safe and

> in fact could do huge damage. And yet many of the

> people posting the pro

> chelation and pro supplement views are not medically

> qualified and have not

> spent the years looking at these issues that Dr.

> Goldberg has. I have been

> quietly reading a lot of the chelation stuff lately

> and have been horrified

> that parents are prepared to " roll the dice " and

> take such risks....Dr.

> Goldberg who is a qualified and experienced medical

> practitioner must be

> very upset reading these posts....I thought Elyse's

> post was pretty

> restrained given the circumstances. It must break

> their hearts to read

> about parents who are putting their kids at risk in

> this way.

>

> By the way I don't find Dr. Goldberg at all

> argumentative...but of course he

> has strong views..that's his job. He does listen to

> us, answer all our

> questions, and sometimes when we suggest we want to

> try something he will

> often agree with us/give us benefit of the doubt.

> But I have never found

> him to be unreasonable. This is probably because we

> treat him with a degree

> of respect and recognize that he has a medical

> degree and years and years of

> experience and a very strong track record (whereas

> we do not). So again,

> nobody on this list is obliged to follow the

> protocol...and yes, let's

> share views and be open minded to ideas......but for

> those who blatantly

> want to flaunt anti- treatments...perhaps there

> is a more appropriate

> forum to do this than the list? I'm sure the

> chelation people must

> have their own site somewhere.

>

> No doubt I will be flamed for this but just had to

> say it. And again,

> please re-read the post below from Donnaaron.

>

> Stefanie (Singapore)

>

>

>

> Re: Alternative methods

>

>

> <<<If any criticism of or

> disagreement with the protocol is something

> that is not allowed

> on this

> list, that should be disclosed when one signs up for

> the

> listserve.<<<

>

>

> At the risk of being flamed -- I don't think Elyse's

> post was about

> people questioning or disagreeing...I think the

> issue here is that

> there have been a few posts which have encouraged

> people whose kids

> are currently the protocol to just go ahead and

> add things

> which not on the protocol -- *without telling Dr.

> Goldberg*. IMO,

> that's just a dangerous thing to do. Many of these

> suppliments and

> other substances might be okay on their own, but

> they can actually

> interfere or interact badly with the drugs he is

> prescribing for

> your children and potentially cause harm. It's one

> thing to

> disagree (you can always find another doctor), quite

> another to

> willfully go against your doctor's instructions.

>

>

>

>

>

>

>

=== message truncated ===

=====

Barb Katsaros

barbkatsaros@...

[Guest guest]

<<<So again,

nobody on this list is obliged to follow the protocol...and

yes, let's

share views and be open minded to ideas......but for those who

blatantly

want to flaunt anti- treatments...perhaps there is a more

appropriate

forum to do this than the list? I'm sure the chelation people

must

have their own site somewhere.>>>

Very well said, ... I just want to reiterate -- I have no

objections at all to people who want to discuss chelation or

suppliments...and neither does this list, from my experience. The

philosophy of this list has always been one of free and open

debate. I can remember a while back someone challenging us on

whether our children were even sick at all and that we should just

leave them alone! But a line has to be drawn somewhere -- and

actually advising someone to continue treatment with Dr. Goldberg,

BUT then to go ahead and use an experimental or contraindicated

therapy without telling him...how can we expect Elyse or Dr. G to

read that and not get upset?

[Guest guest]

But the question is, why is that happening? Why are people feeling the

need to hide things? The relationship between Dr. and pt should be

non-threatening enough that these issues can be discussed in the open

(between Dr. and pt.) without fear or ridicule, even if there is

disagreement. If the new policy is to hunt down and discharge non-compliant

parents, the place to announce it is not on this listserve. Like Cheryl

said, hopefully something good will come of this. I have found this list

immensely helpful and would hate to see it ruined by something as simple as

a communication problem. My son has been helped immensely by Dr. G, and I

thank God for him every day, but I can certainly empathize with parents

whose children are not doing as well.

I'll shut up now......... Becky

> QUOTE:

> ... I don't think Elyse's post was about people questioning or

disagreeing...I think the issue here is that there have been a few posts

which have encouraged people whose kids are currently the protocol to

just go ahead and add things which not on the protocol -- *without telling

Dr. Goldberg*. ...

>

> ___________

>

> I agree.

> Though I do see how it could be taken the wrong way.

>

> Let's admit- we're on this list because we (or someone close to us)

suffer(s) from immune-related disorders/diseases and we are passionate about

finding help/a cure.

> Everyone's passion comes out in different ways (i.e. sarcastic, harsh,

swooning, joyfully, etc) at different times. Sometimes you can see the

curdled ooze dripping from the screen and other times you can picture the

list member floating away from his/her keyboard on a white fluffy cloud as

soon as the send button is clicked.

>

> I prefer the gravity-defying posts, but I learn from the sticky one's,

too.

>

> -

>

>

>

> Reality lies beyond the horizon...

> Wonderwegian

>

>

[Guest guest]

I believe the question of creating confusion is very relevant. There are

many variables from one child to another within the protocol. If you

try to follow all diet restrictions brought up on this list there would be

no foods available at all. A wide variety of medications that Dr g is using

are discussed as well but not all meds are appropriate to all children.

There are many parents that follow this list that are not necessarily Dr G

patients as seen in the last few days. Many of these folks feel their

situation is desperate and are will to take risks to get results. That is

why we have a medical doctor with the proper credentials treat our children.

If you don't agree with Dr G find a doctor you can work with. Playing doctor

with your child is dangerous please be kind enough to not play doctor with

other people's children just because their parents are desperate and you

can. Being a parent of an autistic son is by far the hardest and most

difficult thing I have ever had to deal with. The added confusion of reading

unsubstantiated solutions does not make it any easier.

Bill

Re: Re: Alternative methods

I think Stefanie made an excellent point. This list is intended to discuss

the protocol. When it veers onto other topics without a clear

indication

that it is off topic, it may give the false impression that these things are

part of or that Dr. G endorses them. So what might appear as

" censorship "

of non--related topics may actually be the moderators' intention of

keeping the list on topic.

However, I think it is important to discuss both the successes and

frustrations of those using the path, along with some clear reasons why

certain

other treatments/supplements/etc are demanded to be avoided when doing the

protocol.

I think Cheryl asked a very good question:

<<My question would be why this is happening in the first place. Are

parents comfortable asking questions and satisfied with the

answers? If not, then what does someone need to do to change things>>

There does seem to be an overwhelming frustration among parents who feel

they

are not getting clear enough answers or are being belittled when they want

to

fully explore why a certain other treatment would or would not be

appropriate

for their child.

I think exploring various " alternative " treatments and directly addressing

many of the specific questions as to why they would not be appropriate as

part

of the protocol would go a long way in boosting parents' confidence with and

understanding the full picture, even during the times of slow or no

obvious

progress. It would also help those considering to better understand

why

so many things thought to be helpful for autistic children are not allowed

on

the protocol.

Cheryl and a few others have done an excellent job of posting studies

supporting some beliefs against various interventions. I think more of

this,

especially coming directly from Dr. Goldberg's office, would help parents

better

understand his reasons for demanding that patients do not use certain things

and help parents feel more comfortable passing on these other things even

during times of slow progress.

Gaylen

[Guest guest]

I just wanted to add my two cents on this vein. I have to agree with

Elyse and day it doesn't make sense to have Dr. G and then not do what

he says. How can you possibly keep track of what is working or not

working if you are doing all kinds of things on your own. I can only

speak for myself and my children and say that when I follow what Dr. G

says and follow the diet as closely as I can and help with the allergies

as much as I can, my kids do the best. I have always found Dr. G to be

very kind and listen to all my suggestions and be open minded. He told

me he knows ABA, VBA is a good thing. So I don't understand some of

these posts. I can understand if you feel Dr G can not help you anymore

and you need to find another Dr as in the case of the one mother. Then

you need to drop Dr G and move on but I don't understand having Dr G and

then going against what he says, you might as well throw your money down

the drain. I know I was so afraid of the medicines at first and really

believed in vitamins and natural means. I read back on all my notes from

the beginning and I see my son did the best when we finally got on board

with the protocol. I still need to get more sugar out of their diets and

more meat and vegies in and I think we will be even better off. My sons

are doing great and I am thankful for Dr G everyday. I really miss the

posts from Marcia Hinds and Pat Koulton. I read they felt they could no

longer safely post here for some reason. I would sure like to know why.

Jerri

[Guest guest]

Stefanie~~

Can you tell me if you're child has seen the ST recommended by Dr. Goldberg.

Thanks~~

Rose

Re: Alternative methods

<<<If any criticism of or

disagreement with the protocol is something that is not allowed

on this

list, that should be disclosed when one signs up for the

listserve.<<<

At the risk of being flamed -- I don't think Elyse's post was about

people questioning or disagreeing...I think the issue here is that

there have been a few posts which have encouraged people whose kids

are currently the protocol to just go ahead and add things

which not on the protocol -- *without telling Dr. Goldberg*. IMO,

that's just a dangerous thing to do. Many of these suppliments and

other substances might be okay on their own, but they can actually

interfere or interact badly with the drugs he is prescribing for

your children and potentially cause harm. It's one thing to

disagree (you can always find another doctor), quite another to

willfully go against your doctor's instructions.

Responsibility for the content of this message lies strictly with

the original author(s), and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

Yes.

Re: Re: Alternative methods

Stefanie~~

Can you tell me if you're child has seen the ST recommended by Dr.

Goldberg.

Thanks~~

Rose

Re: Alternative methods

<<<If any criticism of or

disagreement with the protocol is something that is not allowed

on this

list, that should be disclosed when one signs up for the

listserve.<<<

At the risk of being flamed -- I don't think Elyse's post was about

people questioning or disagreeing...I think the issue here is that

there have been a few posts which have encouraged people whose kids

are currently the protocol to just go ahead and add things

which not on the protocol -- *without telling Dr. Goldberg*. IMO,

that's just a dangerous thing to do. Many of these suppliments and

other substances might be okay on their own, but they can actually

interfere or interact badly with the drugs he is prescribing for

your children and potentially cause harm. It's one thing to

disagree (you can always find another doctor), quite another to

willfully go against your doctor's instructions.

Responsibility for the content of this message lies strictly with

the original author(s), and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

Thanks Gaylen. I went back and read the posts involved and noticed

something interesting. Those who feel there's a problem are also

the ones responding to these and similar posts. (clarifying what

isn't part of the prococol, the risks of alternatives, or backing

in some way) Seems somewhat ironic.

What you described below is what I felt many were expressing.

Cheryl

>

> I think Cheryl asked a very good question:

> <<My question would be why this is happening in the first place.

Are

> parents comfortable asking questions and satisfied with the

> answers? If not, then what does someone need to do to change

things>>

>

> There does seem to be an overwhelming frustration among parents

who feel they

> are not getting clear enough answers or are being belittled when

they want to

> fully explore why a certain other treatment would or would not be

appropriate

> for their child.

>

> I think exploring various " alternative " treatments and directly

addressing

> many of the specific questions as to why they would not be

appropriate as part

> of the protocol would go a long way in boosting parents'

confidence with and

> understanding the full picture, even during the times of slow

or no obvious

> progress. It would also help those considering to better

understand why

> so many things thought to be helpful for autistic children are not

allowed on

> the protocol.

>

> Cheryl and a few others have done an excellent job of posting

studies

> supporting some beliefs against various interventions. I

think more of this,

> especially coming directly from Dr. Goldberg's office, would help

parents better

> understand his reasons for demanding that patients do not use

certain things

> and help parents feel more comfortable passing on these other

things even

> during times of slow progress.

> Gaylen

>

>

>

[Guest guest]

Hello:

I am a faithful follower of Dr. Goldberg and the protocol for 9

years and my son has made tremendous progress. He was once totally non verbal

and now he speaks in full sentences. He once had no eye contact and now looks

us right in the eyes and speaks to us. He once had no skills and now can write

in script, do math, read and work on the computer. He loves music and dancing

and plays the piano. I know Dr. Goldberg has helped my son achieve this

higher level of functioning and I am grateful for all the progress he has made.

I

have always found Dr. Goldberg's advice on other alternatives, such as

secretin, to be absolutely right and am glad I listened to his warnings. I am

hoping

for even more progress in the future. Just some thoughts on the protocol.

Gayle

[Guest guest]

Gayle,

Secretin significantly improved my son's quality of life to the point

where he was asking if we could please go get him another shot. I'm

ignorant on this point--could you please tell me Dr. Goldberg's

objection? Thanks,

Jane

On Aug 13, 2004, at 12:06 AM, gvizjazz@... wrote:

> Hello:

> I am a faithful follower of Dr. Goldberg and the protocol

> for 9

> years and my son has made tremendous progress. He was once totally non

> verbal

> and now he speaks in full sentences. He once had no eye contact and

> now looks

> us right in the eyes and speaks to us. He once had no skills and now

> can write

> in script, do math, read and work on the computer. He loves music and

> dancing

> and plays the piano. I know Dr. Goldberg has helped my son achieve this

> higher level of functioning and I am grateful for all the progress he

> has made. I

> have always found Dr. Goldberg's advice on other alternatives, such as

> secretin, to be absolutely right and am glad I listened to his

> warnings. I am hoping

> for even more progress in the future. Just some thoughts on the

> protocol.

> Gayle

>

>

>

[Guest guest]

In a message dated 8/13/04 12:28:34 PM Eastern Daylight Time, jbjny@...

writes:

> Secretin significantly improved my son's quality of life

Unfortunately Secretin has not only undergone several trials where it showed

no demonstrable results but it has also been linked to seizures and one, if

not more, death. Kathy -NNY

[Guest guest]

Hi Gayle,

I'm so glad to hear of your son's success. One thing really grabbed

my attention...You say your son was completely non-verbal. Did he

develop speech and then lose it or did he never speak at all before

protocol? And at what point in protocol did he begin speaking. I ask

this because my 4 1/2 year old daughter is completely non-verbal

having never developed speech. She makes many sounds (using specific

ones for specific reasons), but has never said a word (although to

be honest, once in a blue moon a word seems to get out - Hi, bye,

other random words, but we are never sure what we heard b/c they are

not repeated). I have found that most children on this list had some

speech when they began or had no speech, but had developed speech at

some point and lost it. I haven't found any that NEVER spoke. I am

seeing progress on the protocol and am hopeful she will one day

speak to me. Any details about your son's progress would be greatly

appreciated.

Thanks,

> Hello:

> I am a faithful follower of Dr. Goldberg and the

protocol for 9

> years and my son has made tremendous progress. He was once totally

non verbal

> and now he speaks in full sentences. He once had no eye contact

and now looks

> us right in the eyes and speaks to us. He once had no skills and

now can write

> in script, do math, read and work on the computer. He loves music

and dancing

> and plays the piano. I know Dr. Goldberg has helped my son achieve

this

> higher level of functioning and I am grateful for all the progress

he has made. I

> have always found Dr. Goldberg's advice on other alternatives,

such as

> secretin, to be absolutely right and am glad I listened to his

warnings. I am hoping

> for even more progress in the future. Just some thoughts on the

protocol.

> Gayle

>

>

>