Re: Dan Protocol feedback~negative reactions accounts

[Guest guest]

I am interested to see what you end up with at the end of this project.  We

have

had great results with our DAN doc, but it seems that those I have talked to who

have not had such great results were the ones who did not follow the protocol

either because it was not convenient for them or because they were confused and

did not have the proper understanding about why they needed to do what they were

doing.

Also, many of them did not make a follow-up appointment with the DAN doc to

discuss why they were not seeing improvements.  Instead, they decided that it

was not working and they opted to start seeing a different doctor.

Our DAN doc reevaluates our daughter's treatment plan often so that we make

sure

we are doing things that work and are necessary. As a result, we make

adjustments and changes as we need to so that she is always improving.

Autism treatment requires an almost exhausting amount of diligence on the part

of parents and I think that many of us are ready for medical school by the time

we have been doing this for a year or two!

 

Jill

Elijah's Retreat

“YOU CAN MAKE A DIFFERENCE!!!  Every significant advance that has happened

for

autism is the result of the efforts of parents.â€

- Jepson, MD (NAA Conference, 2005)

 

                                    

________________________________

From: mercurybabies2 <mercurybabies2@...>

Sent: Wed, January 5, 2011 5:37:34 PM

Subject: [ ] Dan Protocol feedback~negative reactions accounts

 

I am working on collecting some parent accounts of negative reactions with DAN

protocols. I'd like to put these in one place for parents who are asking the

question " what can happen with these protocols " .

If you had used a DAN protocol and had problems with it, regressions, etc, or it

made your child sick and are willing to share your experience with me please

contact me. I plan to put these accounts together on a webpage. Your names can

be left out if you wish. I can also share this file with this list if everyone

would like it for future reference.

Please specify what protocol the DAN prescribed, any relevant information about

how the rounds went, what happened, is your child ok now or are they still left

with the negative effects. Anything you feel another parent would want to know

up front before choosing to to follow their DAN's protocol. You can also just

look up an older post that details your experience.

Thank you in advance to those who wish to participate.

Jan

[Guest guest]

Jill,

If you are comfortable sharing, do you have a parent-driven treatment plan or a

Dan! driven treatment plan? Or, in other words, who picked your chelation

protocol?

>

> I am interested to see what you end up with at the end of this project.  We

have

> had great results with our DAN doc, but it seems that those I have talked to

who

> have not had such great results were the ones who did not follow the protocol

> either because it was not convenient for them or because they were confused

and

> did not have the proper understanding about why they needed to do what they

were

> doing.

> Also, many of them did not make a follow-up appointment with the DAN doc to

> discuss why they were not seeing improvements.  Instead, they decided that it

> was not working and they opted to start seeing a different doctor.

> Our DAN doc reevaluates our daughter's treatment plan often so that we make

sure

> we are doing things that work and are necessary. As a result, we make

> adjustments and changes as we need to so that she is always improving.

> Autism treatment requires an almost exhausting amount of diligence on the

part

> of parents and I think that many of us are ready for medical school by the

time

> we have been doing this for a year or two!

>  

> Jill

> Elijah's Retreat

> “YOU CAN MAKE A DIFFERENCE!!!  Every significant advance that has happened

for

> autism is the result of the efforts of parents.â€

> - Jepson, MD (NAA Conference, 2005)

>  

>                                     

>

>

>

>

> ________________________________

> From: mercurybabies2 <mercurybabies2@...>

>

> Sent: Wed, January 5, 2011 5:37:34 PM

> Subject: [ ] Dan Protocol feedback~negative reactions accounts

>

>  

> I am working on collecting some parent accounts of negative reactions with DAN

> protocols. I'd like to put these in one place for parents who are asking the

> question " what can happen with these protocols " .

>

>

> If you had used a DAN protocol and had problems with it, regressions, etc, or

it

> made your child sick and are willing to share your experience with me please

> contact me. I plan to put these accounts together on a webpage. Your names can

> be left out if you wish. I can also share this file with this list if everyone

> would like it for future reference.

>

> Please specify what protocol the DAN prescribed, any relevant information

about

> how the rounds went, what happened, is your child ok now or are they still

left

> with the negative effects. Anything you feel another parent would want to know

> up front before choosing to to follow their DAN's protocol. You can also just

> look up an older post that details your experience.

>

>

> Thank you in advance to those who wish to participate.

> Jan

>

>

>

>

>

>

>

>

[Guest guest]

Are you even chelating? Before you start defending the DAN's and blaming the

parents for what happened to their kids....

The parents I've spoken with had quite the contrary experience and it was not

for lack of following up with their doctors. When you have a child who regresses

into a babbling mess from an IV of EDTA....that's really not something the

parent did. These parents did EXACTLY what their DAN said to do...and it

resulted in terrible repercussions for their children. And to the tune of

thousands of dollars. And who is going to pay that kind of money and just not

follow up? Seriously?

I don't know what your DAN is doing for chelation. Or if you're even doing any

chelation. Some of the doctors seem to be more reasonable, even a few who go

along with AC chelation, but most to them do NOT do the chelation properly.

Generally these kids do well for a while but eventually start experiencing

problems when improper chelation is done. Some of them go horribly down hill

right from the first round their DAN does. I certainly hope this doesn't become

your experience down the road. But I've seen it happen more times than not.

I've been at this a lot longer than a year or two......so I'm certainly not new

here.....and I don't see DAN's cranking out kids who are getting better. They

have well managed cases of autism, but if you remove all those pricey

supplements they sell you, your kid returns to square one. And they have made a

lot of kids worse. And put a lot of parents into the poor house.

The parents I've spoken with have not stated they stopped the DAN doctor

chelation because it wasn't working. They stopped it because it made their

children very sick. I think it's easy to say they just didn't follow the

recommendations because that's easier than admitting maybe these doctors don't

know everything. And most of them did go back to their doctor to report the

problems, but the doctor refused to consider doing anything else other than

their own protocol.

I do hope that I don't hear one day that this happens to your child. I've seen a

lot of people over the years sing the praises of their wonderful doctor, only

later on to post something bad has happened with the protocol the doctor gave

them. I do think its kind of smug to post that the parents must be ignoring the

doctors orders and not following up without having any basis for your

accusations. As if these parents take their child's treatment lightly and you're

the only one who takes it seriously?

What's not convenient is AC chelation and DAN's aren't doing that. It's so much

easier to take your kid to the doctor for an IV of DMSA than it is to give the

meds for three days/two nights including waking at night. So I don't think

people are leaving DAN protocol because it's not convenient for them.

Since the original purpose of this post applied to parents who wish to share

their stories off list about any negative chelation experiences they had with

their doctors....I'm not really sure why you replied at all. Other than to try

to heat things up.

Either way I wish you well, I'm really not here to debate this with you or

anyone else. I already know how to cure my son, what everyone else does is their

problem.

>

> I am interested to see what you end up with at the end of this project.  We

have

> had great results with our DAN doc, but it seems that those I have talked to

who

> have not had such great results were the ones who did not follow the protocol

> either because it was not convenient for them or because they were confused

and

> did not have the proper understanding about why they needed to do what they

were

> doing.

> Also, many of them did not make a follow-up appointment with the DAN doc to

> discuss why they were not seeing improvements.  Instead, they decided that it

> was not working and they opted to start seeing a different doctor.

> Our DAN doc reevaluates our daughter's treatment plan often so that we make

sure

> we are doing things that work and are necessary. As a result, we make

> adjustments and changes as we need to so that she is always improving.

> Autism treatment requires an almost exhausting amount of diligence on the

part

> of parents and I think that many of us are ready for medical school by the

time

> we have been doing this for a year or two!

>  

> Jill

> Elijah's Retreat

> “YOU CAN MAKE A DIFFERENCE!!!  Every significant advance that has happened

for

> autism is the result of the efforts of parents.â€

> - Jepson, MD (NAA Conference, 2005)

>  

>                                     

>

>

>

>

> ________________________________

> From: mercurybabies2 <mercurybabies2@...>

>

> Sent: Wed, January 5, 2011 5:37:34 PM

> Subject: [ ] Dan Protocol feedback~negative reactions accounts

>

>  

> I am working on collecting some parent accounts of negative reactions with DAN

> protocols. I'd like to put these in one place for parents who are asking the

> question " what can happen with these protocols " .

>

>

> If you had used a DAN protocol and had problems with it, regressions, etc, or

it

> made your child sick and are willing to share your experience with me please

> contact me. I plan to put these accounts together on a webpage. Your names can

> be left out if you wish. I can also share this file with this list if everyone

> would like it for future reference.

>

> Please specify what protocol the DAN prescribed, any relevant information

about

> how the rounds went, what happened, is your child ok now or are they still

left

> with the negative effects. Anything you feel another parent would want to know

> up front before choosing to to follow their DAN's protocol. You can also just

> look up an older post that details your experience.

>

>

> Thank you in advance to those who wish to participate.

> Jan

>

>

>

>

>

>

>

>

[Guest guest]

Thank you for asking   Up front, you all should know that we home school all

4

of our children, so some or much of what I say may or may not apply to the

majority on this board.

We have a team treatment plan.  Our team consists of me, my husband, our DAN

doc, and the input from family and friends.  (I like to not tell family and

friends when we have made treatment changes so that when they notice

things about our daughter it is less biased) 

Our DAN doctor has always laid out before us all of our options regarding

chelation.  Then we talk about the pros and cons with each in regards to our

daughter.  We have used several methods because different ones were right for

her at different times. (for instance, our first round of chelation was in the

form of a transdermal cream which we applied 3x/day for 3 days/week. At the time

this was right for her because we were battling clostridia and candida and an

oral or IV chelation protocol would have made both of those issues worse. 

Treating this way allowed us to treat these conditions simultaneously.)

While our doctor does attend DAN/ARI conferences and trainings, he also

continues to educate himself regarding all treatment options.  When a parent

comes to him and asks about something he has not heard of, he takes note and

takes a weekend to learn all he can so that he can best advise the parent.  

This past summer, we made changes in our chelation treatment plan and our DAN

doc told me about  Cutler's protocol.  So, that was an option that was

on

the table for us as well as the DAN protocol. 

In the end, it comes down to my husband and I choosing what we believe is the

right treatment for our daughter.  That being said, there is no way we could

make that decision without our DAN doc. We have been watching our daughter get

better in the way one might watch a butterfly emerging from its coccoon because

we know that her life will be even more free and beautiful. 

 

Jill

Elijah's Retreat

“YOU CAN MAKE A DIFFERENCE!!!  Every significant advance that has happened

for

autism is the result of the efforts of parents.â€

- Jepson, MD (NAA Conference, 2005)

 

                                    

________________________________

From: ladyshrink222 <Ladyshrink111@...>

Sent: Thu, January 6, 2011 5:28:34 PM

Subject: [ ] Re: Dan Protocol feedback~negative reactions accounts

 

Jill,

If you are comfortable sharing, do you have a parent-driven treatment plan or a

Dan! driven treatment plan? Or, in other words, who picked your chelation

protocol?

>

> I am interested to see what you end up with at the end of this project.  We

>have

>

> had great results with our DAN doc, but it seems that those I have talked to

>who

>

> have not had such great results were the ones who did not follow the protocol

> either because it was not convenient for them or because they were confused

and

>

> did not have the proper understanding about why they needed to do what they

>were

>

> doing.

> Also, many of them did not make a follow-up appointment with the DAN doc to

> discuss why they were not seeing improvements.  Instead, they decided that it

> was not working and they opted to start seeing a different doctor.

> Our DAN doc reevaluates our daughter's treatment plan often so that we make

>sure

>

> we are doing things that work and are necessary. As a result, we make

> adjustments and changes as we need to so that she is always improving.

> Autism treatment requires an almost exhausting amount of diligence on the

part

> of parents and I think that many of us are ready for medical school by the

time

>

> we have been doing this for a year or two!

>  

> Jill

> Elijah's Retreat

> “YOU CAN MAKE A DIFFERENCE!!!  Every significant advance that has happened

for

> autism is the result of the efforts of parents.â€

> - Jepson, MD (NAA Conference, 2005)

>  

>                                     

>

>

>

>

> ________________________________

> From: mercurybabies2 <mercurybabies2@...>

>

> Sent: Wed, January 5, 2011 5:37:34 PM

> Subject: [ ] Dan Protocol feedback~negative reactions accounts

>

>  

> I am working on collecting some parent accounts of negative reactions with DAN

> protocols. I'd like to put these in one place for parents who are asking the

> question " what can happen with these protocols " .

>

>

> If you had used a DAN protocol and had problems with it, regressions, etc, or

>it

>

> made your child sick and are willing to share your experience with me please

> contact me. I plan to put these accounts together on a webpage. Your names can

> be left out if you wish. I can also share this file with this list if everyone

> would like it for future reference.

>

> Please specify what protocol the DAN prescribed, any relevant information

about

>

> how the rounds went, what happened, is your child ok now or are they still

left

>

> with the negative effects. Anything you feel another parent would want to know

> up front before choosing to to follow their DAN's protocol. You can also just

> look up an older post that details your experience.

>

>

> Thank you in advance to those who wish to participate.

> Jan

>

>

>

>

>

>

>

>

[Guest guest]

Well we certainly wish you the best. No one wants to see any of our kids get

sicker. We all want them to recover.

There really is no different methods are right for different times. The

medications still work the same way no matter what life situation is going on at

that time.

You can do TD chelation and still do it right by timing it appropriately. Three

times a day isn't appropriate. Having clostridia and yeast does not prevent oral

chelation nor proper timing. As both conditions can be treated successfully

while chelating properly.

and I can both tell you there is never a good reason to give chelators

infrequently. That is the very problem that causes problems eventually.

I am happy to hear that you are now aware of frequent low dose chelation. No one

can blame you for doing something previously before you knew there was a safer

way. Really, the only reason we still post is here is to try to provide that

information for parents who don't have it.

It's unfortunate that you can't make a decision without a doctor.

I can't imagine that situation for myself. But, you do what you feel is best and

I do wish the best for your child.

> >

> > I am interested to see what you end up with at the end of this project.  We

> >have

> >

> > had great results with our DAN doc, but it seems that those I have talked to

> >who

> >

> > have not had such great results were the ones who did not follow the

protocol

> > either because it was not convenient for them or because they were confused

and

> >

> > did not have the proper understanding about why they needed to do what they

> >were

> >

> > doing.

> > Also, many of them did not make a follow-up appointment with the DAN doc to

> > discuss why they were not seeing improvements.  Instead, they decided that

it

> > was not working and they opted to start seeing a different doctor.

> > Our DAN doc reevaluates our daughter's treatment plan often so that we

make

> >sure

> >

> > we are doing things that work and are necessary. As a result, we make

> > adjustments and changes as we need to so that she is always improving.

> > Autism treatment requires an almost exhausting amount of diligence on the

part

>

> > of parents and I think that many of us are ready for medical school by the

time

> >

> > we have been doing this for a year or two!

> >  

> > Jill

> > Elijah's Retreat

> > “YOU CAN MAKE A DIFFERENCE!!!  Every significant advance that has

happened for

>

> > autism is the result of the efforts of parents.â€

> > - Jepson, MD (NAA Conference, 2005)

> >  

> >                                     

> >

> >

> >

> >

> > ________________________________

> > From: mercurybabies2 <mercurybabies2@>

> >

> > Sent: Wed, January 5, 2011 5:37:34 PM

> > Subject: [ ] Dan Protocol feedback~negative reactions accounts

> >

> >  

> > I am working on collecting some parent accounts of negative reactions with

DAN

>

> > protocols. I'd like to put these in one place for parents who are asking the

> > question " what can happen with these protocols " .

> >

> >

> > If you had used a DAN protocol and had problems with it, regressions, etc,

or

> >it

> >

> > made your child sick and are willing to share your experience with me please

> > contact me. I plan to put these accounts together on a webpage. Your names

can

>

> > be left out if you wish. I can also share this file with this list if

everyone

>

> > would like it for future reference.

> >

> > Please specify what protocol the DAN prescribed, any relevant information

about

> >

> > how the rounds went, what happened, is your child ok now or are they still

left

> >

> > with the negative effects. Anything you feel another parent would want to

know

>

> > up front before choosing to to follow their DAN's protocol. You can also

just

> > look up an older post that details your experience.

> >

> >

> > Thank you in advance to those who wish to participate.

> > Jan

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

by different situations I meant medical ones, not that we were too busy or

that

it was inconvenient.  We actually spent all summer doing the low dose AC

protocol before deciding to move on to a combo of IV and oral. 

 

Jill

Elijah's Retreat

“YOU CAN MAKE A DIFFERENCE!!!  Every significant advance that has happened

for

autism is the result of the efforts of parents.â€

- Jepson, MD (NAA Conference, 2005)

 

                                    

________________________________

From: mercurybabies2 <mercurybabies2@...>

Sent: Thu, January 6, 2011 6:48:33 PM

Subject: [ ] Re: Dan Protocol feedback~negative reactions accounts

 

Well we certainly wish you the best. No one wants to see any of our kids get

sicker. We all want them to recover.

There really is no different methods are right for different times. The

medications still work the same way no matter what life situation is going on at

that time.

You can do TD chelation and still do it right by timing it appropriately. Three

times a day isn't appropriate. Having clostridia and yeast does not prevent oral

chelation nor proper timing. As both conditions can be treated successfully

while chelating properly.

and I can both tell you there is never a good reason to give chelators

infrequently. That is the very problem that causes problems eventually.

I am happy to hear that you are now aware of frequent low dose chelation. No one

can blame you for doing something previously before you knew there was a safer

way. Really, the only reason we still post is here is to try to provide that

information for parents who don't have it.

It's unfortunate that you can't make a decision without a doctor.

I can't imagine that situation for myself. But, you do what you feel is best and

I do wish the best for your child.

> >

> > I am interested to see what you end up with at the end of this project.  We

> >have

> >

> > had great results with our DAN doc, but it seems that those I have talked to

> >who

> >

> > have not had such great results were the ones who did not follow the

protocol

>

> > either because it was not convenient for them or because they were confused

>and

>

> >

> > did not have the proper understanding about why they needed to do what they

> >were

> >

> > doing.

> > Also, many of them did not make a follow-up appointment with the DAN doc to

> > discuss why they were not seeing improvements.  Instead, they decided that

it

>

> > was not working and they opted to start seeing a different doctor.

> > Our DAN doc reevaluates our daughter's treatment plan often so that we

make

> >sure

> >

> > we are doing things that work and are necessary. As a result, we make

> > adjustments and changes as we need to so that she is always improving.

> > Autism treatment requires an almost exhausting amount of diligence on the

>part

>

>

> > of parents and I think that many of us are ready for medical school by the

>time

>

> >

> > we have been doing this for a year or two!

> >  

> > Jill

> > Elijah's Retreat

> > “YOU CAN MAKE A DIFFERENCE!!!  Every significant advance that has

happened

>for

>

>

> > autism is the result of the efforts of parents.â€

> > - Jepson, MD (NAA Conference, 2005)

> >  

> >                                     

> >

> >

> >

> >

> > ________________________________

> > From: mercurybabies2 <mercurybabies2@>

> >

> > Sent: Wed, January 5, 2011 5:37:34 PM

> > Subject: [ ] Dan Protocol feedback~negative reactions accounts

> >

> >  

> > I am working on collecting some parent accounts of negative reactions with

>DAN

>

>

> > protocols. I'd like to put these in one place for parents who are asking the

> > question " what can happen with these protocols " .

> >

> >

> > If you had used a DAN protocol and had problems with it, regressions, etc,

or

>

> >it

> >

> > made your child sick and are willing to share your experience with me please

> > contact me. I plan to put these accounts together on a webpage. Your names

>can

>

>

> > be left out if you wish. I can also share this file with this list if

>everyone

>

>

> > would like it for future reference.

> >

> > Please specify what protocol the DAN prescribed, any relevant information

>about

>

> >

> > how the rounds went, what happened, is your child ok now or are they still

>left

>

> >

> > with the negative effects. Anything you feel another parent would want to

>know

>

>

> > up front before choosing to to follow their DAN's protocol. You can also

just

>

> > look up an older post that details your experience.

> >

> >

> > Thank you in advance to those who wish to participate.

> > Jan

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

thanks for clarifying that. And thanks for explaining things off list, it's very

easy to misconstrue posts.

> > >

> > > I am interested to see what you end up with at the end of this project. 

We

> > >have

> > >

> > > had great results with our DAN doc, but it seems that those I have talked

to

>

> > >who

> > >

> > > have not had such great results were the ones who did not follow the

protocol

> >

> > > either because it was not convenient for them or because they were

confused

> >and

> >

> > >

> > > did not have the proper understanding about why they needed to do what

they

> > >were

> > >

> > > doing.

> > > Also, many of them did not make a follow-up appointment with the DAN

doc to

> > > discuss why they were not seeing improvements.  Instead, they decided

that it

> >

> > > was not working and they opted to start seeing a different doctor.

> > > Our DAN doc reevaluates our daughter's treatment plan often so that we

make

> > >sure

> > >

> > > we are doing things that work and are necessary. As a result, we make

> > > adjustments and changes as we need to so that she is always improving.

> > > Autism treatment requires an almost exhausting amount of diligence on the

> >part

> >

> >

> > > of parents and I think that many of us are ready for medical school by

the

> >time

> >

> > >

> > > we have been doing this for a year or two!

> > >  

> > > Jill

> > > Elijah's Retreat

> > > “YOU CAN MAKE A DIFFERENCE!!!  Every significant advance that has

happened

> >for

> >

> >

> > > autism is the result of the efforts of parents.â€

> > > - Jepson, MD (NAA Conference, 2005)

> > >  

> > >                                     

> > >

> > >

> > >

> > >

> > > ________________________________

> > > From: mercurybabies2 <mercurybabies2@>

> > >

> > > Sent: Wed, January 5, 2011 5:37:34 PM

> > > Subject: [ ] Dan Protocol feedback~negative reactions

accounts

> > >

> > >  

> > > I am working on collecting some parent accounts of negative reactions with

> >DAN

> >

> >

> > > protocols. I'd like to put these in one place for parents who are asking

the

>

> > > question " what can happen with these protocols " .

> > >

> > >

> > > If you had used a DAN protocol and had problems with it, regressions, etc,

or

> >

> > >it

> > >

> > > made your child sick and are willing to share your experience with me

please

>

> > > contact me. I plan to put these accounts together on a webpage. Your names

> >can

> >

> >

> > > be left out if you wish. I can also share this file with this list if

> >everyone

> >

> >

> > > would like it for future reference.

> > >

> > > Please specify what protocol the DAN prescribed, any relevant information

> >about

> >

> > >

> > > how the rounds went, what happened, is your child ok now or are they still

> >left

> >

> > >

> > > with the negative effects. Anything you feel another parent would want to

> >know

> >

> >

> > > up front before choosing to to follow their DAN's protocol. You can also

just

> >

> > > look up an older post that details your experience.

> > >

> > >

> > > Thank you in advance to those who wish to participate.

> > > Jan

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Im interested as well. We also have a DAN doc that we really like. He uses AC

protocol, but has used higher doses (1-2 mg per lb) with some patients. He's

very collaborative, encourages my questions, and not at all offended if I push

back on his recommendations. Most appointments, I leave with reading

assignments!

I have encountered some DANs that werent interested in my input or questions,

had a " my way or the high-way " attitude and we never got past the initial

interview.

Karla

>

> I am interested to see what you end up with at the end of this project.  We

have

> had great results with our DAN doc, but it seems that those I have talked to

who

> have not had such great results were the ones who did not follow the protocol

> either because it was not convenient for them or because they were confused

and

> did not have the proper understanding about why they needed to do what they

were

> doing.

> Also, many of them did not make a follow-up appointment with the DAN doc to

> discuss why they were not seeing improvements.  Instead, they decided that it

> was not working and they opted to start seeing a different doctor.

> Our DAN doc reevaluates our daughter's treatment plan often so that we make

sure

> we are doing things that work and are necessary. As a result, we make

> adjustments and changes as we need to so that she is always improving.

> Autism treatment requires an almost exhausting amount of diligence on the

part

> of parents and I think that many of us are ready for medical school by the

time

> we have been doing this for a year or two!

>  

> Jill

> Elijah's Retreat

> “YOU CAN MAKE A DIFFERENCE!!!  Every significant advance that has happened

for

> autism is the result of the efforts of parents.â€

> - Jepson, MD (NAA Conference, 2005)

>  

>                                     

>

>

>

>

> ________________________________

> From: mercurybabies2 <mercurybabies2@...>

>

> Sent: Wed, January 5, 2011 5:37:34 PM

> Subject: [ ] Dan Protocol feedback~negative reactions accounts

>

>  

> I am working on collecting some parent accounts of negative reactions with DAN

> protocols. I'd like to put these in one place for parents who are asking the

> question " what can happen with these protocols " .

>

>

> If you had used a DAN protocol and had problems with it, regressions, etc, or

it

> made your child sick and are willing to share your experience with me please

> contact me. I plan to put these accounts together on a webpage. Your names can

> be left out if you wish. I can also share this file with this list if everyone

> would like it for future reference.

>

> Please specify what protocol the DAN prescribed, any relevant information

about

> how the rounds went, what happened, is your child ok now or are they still

left

> with the negative effects. Anything you feel another parent would want to know

> up front before choosing to to follow their DAN's protocol. You can also just

> look up an older post that details your experience.

>

>

> Thank you in advance to those who wish to participate.

> Jan

>

>

>

>

>

>

>

>

[Guest guest]

well if I ever get any reasonable feedback from the list, I'll be sure to post

what I find....

I'm not holding much hope that's going to happen the way things have been going

on this list lately...but you never know!

You are lucky to have one who uses AC. It's the ones whose don't where the

problems come in.

> >

> > I am interested to see what you end up with at the end of this project.  We

have

> > had great results with our DAN doc, but it seems that those I have talked to

who

> > have not had such great results were the ones who did not follow the

protocol

> > either because it was not convenient for them or because they were confused

and

> > did not have the proper understanding about why they needed to do what they

were

> > doing.

> > Also, many of them did not make a follow-up appointment with the DAN doc to

> > discuss why they were not seeing improvements.  Instead, they decided that

it

> > was not working and they opted to start seeing a different doctor.

> > Our DAN doc reevaluates our daughter's treatment plan often so that we

make sure

> > we are doing things that work and are necessary. As a result, we make

> > adjustments and changes as we need to so that she is always improving.

> > Autism treatment requires an almost exhausting amount of diligence on the

part

> > of parents and I think that many of us are ready for medical school by the

time

> > we have been doing this for a year or two!

> >  

> > Jill

> > Elijah's Retreat

> > “YOU CAN MAKE A DIFFERENCE!!!  Every significant advance that has

happened for

> > autism is the result of the efforts of parents.â€

> > - Jepson, MD (NAA Conference, 2005)

> >  

> >                                     

> >

> >

> >

> >

> > ________________________________

> > From: mercurybabies2 <mercurybabies2@>

> >

> > Sent: Wed, January 5, 2011 5:37:34 PM

> > Subject: [ ] Dan Protocol feedback~negative reactions accounts

> >

> >  

> > I am working on collecting some parent accounts of negative reactions with

DAN

> > protocols. I'd like to put these in one place for parents who are asking the

> > question " what can happen with these protocols " .

> >

> >

> > If you had used a DAN protocol and had problems with it, regressions, etc,

or it

> > made your child sick and are willing to share your experience with me please

> > contact me. I plan to put these accounts together on a webpage. Your names

can

> > be left out if you wish. I can also share this file with this list if

everyone

> > would like it for future reference.

> >

> > Please specify what protocol the DAN prescribed, any relevant information

about

> > how the rounds went, what happened, is your child ok now or are they still

left

> > with the negative effects. Anything you feel another parent would want to

know

> > up front before choosing to to follow their DAN's protocol. You can also

just

> > look up an older post that details your experience.

> >

> >

> > Thank you in advance to those who wish to participate.

> > Jan

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

He was not easy to find! While I dont advocate the DAN protocol and know it can

be an absolute disaster, I do know of other parents that see DANs that use AC

protocol. They are out there, but it takes some digging to find them.

Some parents simply dont feel comfortable chelating without a doc. Im much more

comfortable with my decisions than I was when we started chelating, but Im not

at the point where Im comfortable doing all of the biomed stuff without a doc.

And at $20 a visit, I can stay in my comfort zone!

Karla

> > >

> > > I am interested to see what you end up with at the end of this project. 

We have

> > > had great results with our DAN doc, but it seems that those I have talked

to who

> > > have not had such great results were the ones who did not follow the

protocol

> > > either because it was not convenient for them or because they were

confused and

> > > did not have the proper understanding about why they needed to do what

they were

> > > doing.

> > > Also, many of them did not make a follow-up appointment with the DAN

doc to

> > > discuss why they were not seeing improvements.  Instead, they decided

that it

> > > was not working and they opted to start seeing a different doctor.

> > > Our DAN doc reevaluates our daughter's treatment plan often so that we

make sure

> > > we are doing things that work and are necessary. As a result, we make

> > > adjustments and changes as we need to so that she is always improving.

> > > Autism treatment requires an almost exhausting amount of diligence on the

part

> > > of parents and I think that many of us are ready for medical school by

the time

> > > we have been doing this for a year or two!

> > >  

> > > Jill

> > > Elijah's Retreat

> > > “YOU CAN MAKE A DIFFERENCE!!!  Every significant advance that has

happened for

> > > autism is the result of the efforts of parents.â€

> > > - Jepson, MD (NAA Conference, 2005)

> > >  

> > >                                     

> > >

> > >

> > >

> > >

> > > ________________________________

> > > From: mercurybabies2 <mercurybabies2@>

> > >

> > > Sent: Wed, January 5, 2011 5:37:34 PM

> > > Subject: [ ] Dan Protocol feedback~negative reactions

accounts

> > >

> > >  

> > > I am working on collecting some parent accounts of negative reactions with

DAN

> > > protocols. I'd like to put these in one place for parents who are asking

the

> > > question " what can happen with these protocols " .

> > >

> > >

> > > If you had used a DAN protocol and had problems with it, regressions, etc,

or it

> > > made your child sick and are willing to share your experience with me

please

> > > contact me. I plan to put these accounts together on a webpage. Your names

can

> > > be left out if you wish. I can also share this file with this list if

everyone

> > > would like it for future reference.

> > >

> > > Please specify what protocol the DAN prescribed, any relevant information

about

> > > how the rounds went, what happened, is your child ok now or are they still

left

> > > with the negative effects. Anything you feel another parent would want to

know

> > > up front before choosing to to follow their DAN's protocol. You can also

just

> > > look up an older post that details your experience.

> > >

> > >

> > > Thank you in advance to those who wish to participate.

> > > Jan

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

We were given 500mg DMSA suppositories for my son. I was told to break them in

half and give them every 8 hours over three days on the weekend. We had no idea

about half-life. I think he had about 4 doses. Then we did a urine test. He

had high lead, elevated mercury and some others (can't remember). His behavior

worsened and his aggression became out of control. Our house became a war zone

- curtains torn off the wall, lots of screaming, throwing things, hitting others

and sensory issues, and we couldn't take him anywhere. Don't get me wrong, he

had some aggression before, but it got way worse after we did the DMSA

challenge.

(I think the lesson learned for me is that you never know what toxicity a child

has and therefore you should never give a high dose of a chelator. My child is

extremely toxic and only tolerates very small doses of chelator now).

You can copy this if you would like to use it.

Liz

>

> I am working on collecting some parent accounts of negative reactions with DAN

protocols. I'd like to put these in one place for parents who are asking the

question " what can happen with these protocols " .

>

> If you had used a DAN protocol and had problems with it, regressions, etc, or

it made your child sick and are willing to share your experience with me please

contact me. I plan to put these accounts together on a webpage. Your names can

be left out if you wish. I can also share this file with this list if everyone

would like it for future reference.

>

> Please specify what protocol the DAN prescribed, any relevant information

about how the rounds went, what happened, is your child ok now or are they still

left with the negative effects. Anything you feel another parent would want to

know up front before choosing to to follow their DAN's protocol. You can also

just look up an older post that details your experience.

>

> Thank you in advance to those who wish to participate.

> Jan

>

[Guest guest]

We're with a DAN doc, only every three months, for his insight, and legal

authority, (for prescriptive things and easy lab access, etc.) and he's OK with

us using the A/C protocol, that he didn't recommend firstly. The DAN didn't work

so well (for us) so he figures why not

I've met many people who haven't convinced me to do things their way. The one's

who are OK with that I tend to go with, juggling wife and kids and job and all.

I do answer to all of them. If I can't so reasonably convince my wife and

children what to do, they don't do it, and I don't expect them to, of how

reasonably I figure we've come along with that approach, that that isn't a

treatment of sorts, but I Feel It Is

I also figure God is somewhat like that. Not an authority figure otherwise of

reason (of what makes so much sense? of my understanding? that I find threats of

trust otherwise or of blind faith reasonable. No.) *whatsoever,* so much for the

*standard* BS? .. .

I expect as much from my professionals and politicians, and volunteers? (that I

have any otherwise? of my believing in being as much and being in the driver's

seat by as much that understanding (and justice, of as much) would become the

thing, and not so much money or power or whatever else

I go with what is so reasonable, as best I can by as much.. .

Glavic

> > > >

> > > > I am interested to see what you end up with at the end of this

project.  We have

> > > > had great results with our DAN doc, but it seems that those I have

talked to who

> > > > have not had such great results were the ones who did not follow the

protocol

> > > > either because it was not convenient for them or because they were

confused and

> > > > did not have the proper understanding about why they needed to do what

they were

> > > > doing.

> > > > Also, many of them did not make a follow-up appointment with the DAN

doc to

> > > > discuss why they were not seeing improvements.  Instead, they decided

that it

> > > > was not working and they opted to start seeing a different doctor.

> > > > Our DAN doc reevaluates our daughter's treatment plan often so that we

make sure

> > > > we are doing things that work and are necessary. As a result, we make

> > > > adjustments and changes as we need to so that she is always improving.

> > > > Autism treatment requires an almost exhausting amount of diligence on

the part

> > > > of parents and I think that many of us are ready for medical school by

the time

> > > > we have been doing this for a year or two!

> > > >  

> > > > Jill

> > > > Elijah's Retreat

> > > > “YOU CAN MAKE A DIFFERENCE!!!  Every significant advance that has

happened for

> > > > autism is the result of the efforts of parents.â€

> > > > - Jepson, MD (NAA Conference, 2005)

> > > >  

> > > >                                     

> > > >

> > > >

> > > >

> > > >

> > > > ________________________________

> > > > From: mercurybabies2 <mercurybabies2@>

> > > >

> > > > Sent: Wed, January 5, 2011 5:37:34 PM

> > > > Subject: [ ] Dan Protocol feedback~negative reactions

accounts

> > > >

> > > >  

> > > > I am working on collecting some parent accounts of negative reactions

with DAN

> > > > protocols. I'd like to put these in one place for parents who are asking

the

> > > > question " what can happen with these protocols " .

> > > >

> > > >

> > > > If you had used a DAN protocol and had problems with it, regressions,

etc, or it

> > > > made your child sick and are willing to share your experience with me

please

> > > > contact me. I plan to put these accounts together on a webpage. Your

names can

> > > > be left out if you wish. I can also share this file with this list if

everyone

> > > > would like it for future reference.

> > > >

> > > > Please specify what protocol the DAN prescribed, any relevant

information about

> > > > how the rounds went, what happened, is your child ok now or are they

still left

> > > > with the negative effects. Anything you feel another parent would want

to know

> > > > up front before choosing to to follow their DAN's protocol. You can also

just

> > > > look up an older post that details your experience.

> > > >

> > > >

> > > > Thank you in advance to those who wish to participate.

> > > > Jan

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

Jill,

Thanks for this, I don't have time to post in depth today, but I will get back

to this.

One point I would like some clarity on is your homeschooling comment. I believe

a LOT of people here homeschool, for one. ONE of the biggest reasons people

homeschool is that they have a child who doesn't " fit " in regular school, their

child just can't get the amount of attention required in a large classroom, so

the rate of homeschooled developmentally challenged kids is quite high.

And what does homeschooling have to do with who picked your protocol? Just

asking but are you saying homeschooling parents work harder or are smarter or

more special or what was the point of including this information?

[ ] Dan Protocol feedback~negative reactions accounts

>

>

> I am working on collecting some parent accounts of negative reactions with

DAN

> protocols. I'd like to put these in one place for parents who are asking the

> question " what can happen with these protocols " .

>

>

> If you had used a DAN protocol and had problems with it, regressions, etc,

or

>it

>

> made your child sick and are willing to share your experience with me please

> contact me. I plan to put these accounts together on a webpage. Your names

can

> be left out if you wish. I can also share this file with this list if

everyone

> would like it for future reference.

>

> Please specify what protocol the DAN prescribed, any relevant information

about

>

> how the rounds went, what happened, is your child ok now or are they still

left

>

> with the negative effects. Anything you feel another parent would want to

know

> up front before choosing to to follow their DAN's protocol. You can also

just

> look up an older post that details your experience.

>

>

> Thank you in advance to those who wish to participate.

> Jan

>

>

>

>

>

>

>

>

[Guest guest]

You don't seem to understand what justice/justness is for our children,

otherwise? (but how would you be able to?) but thanks for where you do? (of your

feeling/s if not subconsciously? of your communicating with me) where you do? ..

..

Just whiz on by my posts where'd you'd rather in that respect, of Communication,

(such facts) that what you have to offer (otherwise?) would be better.. .

I consider what isn't so reasonable abusive. OK, or whatever? .. . where you

wanted to understand? that you wouldn't from as much, but I've done The

analysis? that you don't seem to care about.. .

It's just The way I Feel, where you'd be interested in as much

Merry Christmas anyway, or not. Have a good day, or not

People tend to be as understanding as they make up their mind/s to be.. .

Glavic

> > > > >

> > > > > I am interested to see what you end up with at the end of this

project. We have

> > > > > had great results with our DAN doc, but it seems that those I have

talked to who

> > > > > have not had such great results were the ones who did not follow

the protocol

> > > > > either because it was not convenient for them or because they were

confused and

> > > > > did not have the proper understanding about why they needed to do

what they were

> > > > > doing.

> > > > > Also, many of them did not make a follow-up appointment with the DAN

doc to

> > > > > discuss why they were not seeing improvements. Instead, they

decided that it

> > > > > was not working and they opted to start seeing a different doctor.

> > > > > Our DAN doc reevaluates our daughter's treatment plan often so

that we make sure

> > > > > we are doing things that work and are necessary. As a result, we

make

> > > > > adjustments and changes as we need to so that she is always

improving.

> > > > > Autism treatment requires an almost exhausting amount of diligence

on the part

> > > > > of parents and I think that many of us are ready for medical school

by the time

> > > > > we have been doing this for a year or two!

> > > > > Â

> > > > > Jill

> > > > > Elijah's Retreat

> > > > > â?oYOU CAN MAKE A DIFFERENCE!!! Every significant advance that has

happened for

> > > > > autism is the result of the efforts of parents.â?

> > > > > - Jepson, MD (NAA Conference, 2005)

> > > > > Â

> > > > > Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â Â

 Â

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > ________________________________

> > > > > From: mercurybabies2 <mercurybabies2@>

> > > > >

> > > > > Sent: Wed, January 5, 2011 5:37:34 PM

> > > > > Subject: [ ] Dan Protocol feedback~negative reactions

accounts

> > > > >

> > > > > Â

> > > > > I am working on collecting some parent accounts of negative

reactions with DAN

> > > > > protocols. I'd like to put these in one place for parents who are

asking the

> > > > > question " what can happen with these protocols " .

> > > > >

> > > > >

> > > > > If you had used a DAN protocol and had problems with it,

regressions, etc, or it

> > > > > made your child sick and are willing to share your experience with

me please

> > > > > contact me. I plan to put these accounts together on a webpage. Your

names can

> > > > > be left out if you wish. I can also share this file with this list

if everyone

> > > > > would like it for future reference.

> > > > >

> > > > > Please specify what protocol the DAN prescribed, any relevant

information about

> > > > > how the rounds went, what happened, is your child ok now or are they

still left

> > > > > with the negative effects. Anything you feel another parent would

want to know

> > > > > up front before choosing to to follow their DAN's protocol. You can

also just

> > > > > look up an older post that details your experience.

> > > > >

> > > > >

> > > > > Thank you in advance to those who wish to participate.

> > > > > Jan

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

HAHAHAHAHA!!! (I am totally laughing out loud right now!)

When I started my post yesterday I was in the middle of writing 9 weeks worth

of

lesson plans and was just taking a breather to check my email.  I had started

with the disclaimer about home schooling because I was intending to head in a

bit of a different direction with my post and it would have been good

for people

reading it to know.  However, what actually happened was that my 3 younger

children got up from naps while I was in mid-thought and I just had to somehow

wrap it up.   Maybe, at some point, it will occur to me where I was headed

originally, but I am not going to bet any money on it!!!   In regards to home

schooling impacting our protocol decisions, it really does not other than home

schooling enables us to flex around whatever our protocol is.  

 

Jill

Elijah's Retreat

“YOU CAN MAKE A DIFFERENCE!!!  Every significant advance that has happened

for

autism is the result of the efforts of parents.â€

- Jepson, MD (NAA Conference, 2005)

 

                                    

________________________________

From: <Ladyshrink111@...>

Sent: Fri, January 7, 2011 8:47:47 AM

Subject: Re: [ ] Re: Dan Protocol feedback~negative reactions

accounts

 

Jill,

Thanks for this, I don't have time to post in depth today, but I will get back

to this.

One point I would like some clarity on is your homeschooling comment. I believe

a LOT of people here homeschool, for one. ONE of the biggest reasons people

homeschool is that they have a child who doesn't " fit " in regular school, their

child just can't get the amount of attention required in a large classroom, so

the rate of homeschooled developmentally challenged kids is quite high.

And what does homeschooling have to do with who picked your protocol? Just

asking but are you saying homeschooling parents work harder or are smarter or

more special or what was the point of including this information?

[ ] Dan Protocol feedback~negative reactions accounts

>

>

> I am working on collecting some parent accounts of negative reactions with DAN

> protocols. I'd like to put these in one place for parents who are asking the

> question " what can happen with these protocols " .

>

>

> If you had used a DAN protocol and had problems with it, regressions, etc, or

>it

>

> made your child sick and are willing to share your experience with me please

> contact me. I plan to put these accounts together on a webpage. Your names can

> be left out if you wish. I can also share this file with this list if everyone

> would like it for future reference.

>

> Please specify what protocol the DAN prescribed, any relevant information

about

>

>

> how the rounds went, what happened, is your child ok now or are they still

left

>

>

> with the negative effects. Anything you feel another parent would want to know

> up front before choosing to to follow their DAN's protocol. You can also just

> look up an older post that details your experience.

>

>

> Thank you in advance to those who wish to participate.

> Jan

>

>

>

>

>

>

>

>

[Guest guest]

I don't have anything to add, but I am SO interested in this thread, I can't

tell you the number of fights I have had with pro-DAN! protocol parents, I am

apparently a brute, but I feel SO strongly about this. Thank you for doing

this, Jan! You ROCK!

>

> I am working on collecting some parent accounts of negative reactions with DAN

protocols. I'd like to put these in one place for parents who are asking the

question " what can happen with these protocols " .

>

> If you had used a DAN protocol and had problems with it, regressions, etc, or

it made your child sick and are willing to share your experience with me please

contact me. I plan to put these accounts together on a webpage. Your names can

be left out if you wish. I can also share this file with this list if everyone

would like it for future reference.

>

> Please specify what protocol the DAN prescribed, any relevant information

about how the rounds went, what happened, is your child ok now or are they still

left with the negative effects. Anything you feel another parent would want to

know up front before choosing to to follow their DAN's protocol. You can also

just look up an older post that details your experience.

>

> Thank you in advance to those who wish to participate.

> Jan

>

[Guest guest]

I have a bad experience to share as well, but don't really have the time to

write it all out right now. In a nutshell:

DMSA suppositories, once a day, 5 on and 9 off was the frequency.

Starting dosage was 200mg, working up to 600. I think it was five or six rounds.

My boy got really sick. I am so happy there doesn't seem to be any permanent

damage.

TJ

________________________________

From: G <luckylot@...>

Sent: Fri, January 7, 2011 4:14:15 PM

Subject: [ ] Re: Dan Protocol feedback~negative reactions accounts

I don't have anything to add, but I am SO interested in this thread, I can't

tell you the number of fights I have had with pro-DAN! protocol parents, I am

apparently a brute, but I feel SO strongly about this. Thank you for doing

this, Jan! You ROCK!

>

> I am working on collecting some parent accounts of negative reactions with DAN

>protocols. I'd like to put these in one place for parents who are asking the

>question " what can happen with these protocols " .

>

>

> If you had used a DAN protocol and had problems with it, regressions, etc, or

>it made your child sick and are willing to share your experience with me please

>contact me. I plan to put these accounts together on a webpage. Your names can

>be left out if you wish. I can also share this file with this list if everyone

>would like it for future reference.

>

> Please specify what protocol the DAN prescribed, any relevant information

about

>how the rounds went, what happened, is your child ok now or are they still left

>with the negative effects. Anything you feel another parent would want to know

>up front before choosing to to follow their DAN's protocol. You can also just

>look up an older post that details your experience.

>

>

> Thank you in advance to those who wish to participate.

> Jan

>

[Guest guest]

Something I think that has been left out of this discussion is the case where

parents are unable to keep seeing DAN! or other doctors because of their

financial situation. When I expressed frustration over seeing DAN!

practitioners and not getting any real help, Andy kindly reminded me that I

shouldn't expect anyone to be able to get to know my child and help him

individually and specifically right off the bat. I realized how demanding I had

become, I wanted my $200 or whatever to pay for THE answer to my questions -

because it's $200 doggonit! and we do not come off that kind of money easy!

Reality check. In order for anyone to help, the person needs to get to know

your child. I do think more often than not, parents end up broke after 3 to 5

DAN! appointments and have little to show for it.

I almost caught myself in a reply to this thread saying no medical professional

ever helped my child (and that would be true), but to be fair, how many times

did I actually see each one? How long did I go, did they even have a chance to

get to know his problems? Not many, not long...and not my fault, just didn't

have the money.

Anyway, I know it's completely beside the fact that the DAN! chelation protocols

are atrocious, but I felt this scenario is very common and therefore should be

included/mentioned in this thread.

> >

> > I am interested to see what you end up with at the end of this project.  We

have

> > had great results with our DAN doc, but it seems that those I have talked to

who

> > have not had such great results were the ones who did not follow the

protocol

> > either because it was not convenient for them or because they were confused

and

> > did not have the proper understanding about why they needed to do what they

were

> > doing.

> > Also, many of them did not make a follow-up appointment with the DAN doc to

> > discuss why they were not seeing improvements.  Instead, they decided that

it

> > was not working and they opted to start seeing a different doctor.

> > Our DAN doc reevaluates our daughter's treatment plan often so that we

make sure

> > we are doing things that work and are necessary. As a result, we make

> > adjustments and changes as we need to so that she is always improving.

> > Autism treatment requires an almost exhausting amount of diligence on the

part

> > of parents and I think that many of us are ready for medical school by the

time

> > we have been doing this for a year or two!

> >  

> > Jill

> > Elijah's Retreat

> > “YOU CAN MAKE A DIFFERENCE!!!  Every significant advance that has

happened for

> > autism is the result of the efforts of parents.â€

> > - Jepson, MD (NAA Conference, 2005)

> >  

> >                                     

> >

> >

> >

> >

> > ________________________________

> > From: mercurybabies2 <mercurybabies2@>

> >

> > Sent: Wed, January 5, 2011 5:37:34 PM

> > Subject: [ ] Dan Protocol feedback~negative reactions accounts

> >

> >  

> > I am working on collecting some parent accounts of negative reactions with

DAN

> > protocols. I'd like to put these in one place for parents who are asking the

> > question " what can happen with these protocols " .

> >

> >

> > If you had used a DAN protocol and had problems with it, regressions, etc,

or it

> > made your child sick and are willing to share your experience with me please

> > contact me. I plan to put these accounts together on a webpage. Your names

can

> > be left out if you wish. I can also share this file with this list if

everyone

> > would like it for future reference.

> >

> > Please specify what protocol the DAN prescribed, any relevant information

about

> > how the rounds went, what happened, is your child ok now or are they still

left

> > with the negative effects. Anything you feel another parent would want to

know

> > up front before choosing to to follow their DAN's protocol. You can also

just

> > look up an older post that details your experience.

> >

> >

> > Thank you in advance to those who wish to participate.

> > Jan

> >

> >

> >

> >

> >

> >

> >

> >