Pfeiffer

[Guest guest]

Hello

We have made an appointment at the Pfeiffer Institute for our 3 yr

old. The most attractive part of the appointment will be getting him

individualized supplements and, hopefully, instructions on MT

promotor.

We already have started GF/CF, CLO, carnosine, some supplements and

chelation.

I have some questions before we go through with it.

This appointment will be very expensive, > $1000. It will also be

terribly inconvenient, as my wife will have to fly by herself with

our 2 kids, and get hotels etc. Furthermore, the people on the phone

were none too committal in terms of saying whether we would actually

see a doctor or just some technician, or what else might be involved

in this appointment. They only said he has to weigh > 30 lbs.

Has anyone else done this? Was it worth it, or can you do just as

well through this listserve? were you able to see a physician?

Please contact me privately if you don't want to share with the group.

Thanks, Matt

[Guest guest]

> We have made an appointment at the Pfeiffer Institute for our 3 yr

> old. The most attractive part of the appointment will be getting

him

> individualized supplements

I have seen no evidence they individualize supplements. They appear

to have about half a dozen recipes and he gets one of them.

if someone from Pfeiffer would care to explain how they individualize

beyond that I for one would be ALL EARS.

> and, hopefully, instructions on MT

> promotor.

>

> We already have started GF/CF, CLO, carnosine, some supplements and

> chelation.

>

> I have some questions before we go through with it.

>

> This appointment will be very expensive, > $1000. It will also be

> terribly inconvenient, as my wife will have to fly by herself with

> our 2 kids, and get hotels etc. Furthermore, the people on the

phone

> were none too committal in terms of saying whether we would actually

> see a doctor or just some technician, or what else might be involved

> in this appointment. They only said he has to weigh > 30 lbs.

Well, why not start by seeing some local doctor who is wiling to help

and seeing how far you get with that before comitting to the multi

thousand dollars of messing around and week of inconvenience it is

going to take to get to Pfeiffer?

They do tell you up front which tests they order - you can get those

same tests done through any willing doctor.

> Has anyone else done this? Was it worth it, or can you do just as

> well through this listserve?

Much better here if you are willing to work at it. ., .. . . .

> were you able to see a physician?

> Please contact me privately if you don't want to share with the

group.

>

> Tha

[Guest guest]

I would like to hear some other parents experiences w/ Pfieffer.

wrote:

> Dear Mel,

>

> is extremely sensitive to ANYTHING we do...We told Pfeiffer from the

> beginning that they are ALL we have re: his medical issues outside of colds,

> etc., and that we would be relentless in calling them with problems. If we

> didn't hear the same day, I called twice the next. We saw good results the

> first six months we were with them. Then yeast hit and we needed more

> consultation. They had a booth at the DAN! conference and I expressed my

> concerns to Dr. Usman. She said to connect with the same nurse all the time

> unless it was an emergency. We did that. We also paid extra to have a

> follow up phone call with Dr. Norman one time. The last follow up we had

> was extremely disappointing because I knew more than the nurse who did the

> consultation.

>

> When I asked her about chelation, she paused and then told me that we really

> should be speaking with Haakenson, the PA who has the most experience

> with autism and has trained the physicians there. I called her immediately,

> and she spent a long time with me brainstorming about the kids and making a

> plan. At that point, we weren't ready to start chelating, but she was

> knowledgable and recommended the same things Andy does. She told me to call

> her any time, and I have. She has always gotten back to me within a day or

> two (I have not needed her to get back to me immediately).

>

> Our appointment yesterday was a mixed bag. They have changed outreaches to

> include an appointment with a physician. My husband and I were both

> impressed with Dr. , who has an autistic son of his own. He seemed to

> be very knowledgable about autism in general, special ed in general, as well

> as gut issues, chelation, and the Pfeiffer stuff. He took time to ask us

> what has helped and not helped. I asked about the viral issues, and he

> explained that Dr. Usman hadn't found testing to be helpful in deciding what

> to do, but said he would take our concerns into consideration in developing

> the new plan. He was MAGNIFICENT with the children. He had all of us

> laughing, and LISTENED when he asked him to sit, lie down, or do

> whatever he needed him to do (I usually have to " translate " ).

>

> The other side of the coin was that we had already been told that prices had

> gone up from the $475 for outreaches to $700-900. Instead of the $1800 we

> had anticipated, our bill came to $2600 for two children!!!!!!!!!! I need

> to get on the phone with Kim Qualtier at Pfeiffer, but today I am going to

> sleep.

>

> I know this is long...When you speak to them, it helps to be very specific

> regarding what you need. I would also ask to talk to Haakenson, the PA

> if you feel you need more expertise. I haven't had to get upset for them to

> respond to me. I have just had to be firm and tell them that I really need

> someone to address my concerns, and if they don't know the answer, they need

> to consult with the physicians.

>

> Hope this helps....I wish there were a lot more choices out there, that is

> for sure!!!!

>

> , Mom to and

>

> >From: skelvin@...

> >Reply-

> >

> >Subject: [ ] RE: Running Scared

> >Date: Mon, 9 Feb 2004 01:56:29 EST

> >

> >;

> >I have been very disappointed in Pfeiffer.

> >They are far too difficult to get a hold of and talk to. You never get to

> >actually speak with a doctor, only someone who really doesn't know much

> >other

> >than to say " take the supplements on the list "

> >They do not explain anything with any detail.

> >There is very little personal interaction. In fact, it has been the most

> >impersonal medical experience I have ever been through. And considering

> >how

> >impersonal many medical professionals can be, that should tell you a lot.

> >I plan to call them tomorrow to speak with someone, but I have little hope

> >in

> >receiving a good response. I can only wish you better luck.

> >

> >Mel

> >

> >

> >In a message dated 2/8/04 8:16:20 PM,

> >writes:

> >

> ><< Subject: Mel RE: RE: Running Scared

> >

> >

> >Dear Mel,

> >

> >

> >We're leaving to go to the Pfeiffer outreach this afternoon, but your post

> >

> >has been on my mind. I know some people need constant reminders, but when

> >

> >they're harsh they can do long term physical damage to the brain, too. I

> >

> >have similar feelings to yours, but have been trying to change them as I

> >see

> >

> >the toll they're taking on my health. When I can, I think more along the

> >

> >lines of: I am working to heal my sons. If I can proceed as soon as is

> >

> >good for them, the better chance they have. I am the one responsible for

> >

> >the timing, and I will do what is good and right. I won't let anyone stand

> >

> >in my way. It is the most important thing for my family.

> >

> >

> >I hope this makes sense. I have found that self-reproach, unfocused rage

> >at

> >

> >the people who did this to my kids and those who choose to remain ignorant,

> >

> >and feelings of helplessness really do bathe my brain with chemicals that

> >

> >make me less effective. I am struggling to rebuild who I was before all

> >

> >this began: a competent woman who laughed, had friends, and could

> >

> >concentrate.

> >

> >

> >May God richly bless your day and give you courage and strength. You'll be

> >

> >in our prayers when we're out of town.

> >

> >

> >, Mom to and

> >

> >Off to gather the troops for the next battle

> >

> >CHAAAAAAAAARRRRRRRRRRGGGGGGGGEEEEEEEEEEE!!!!!!!!!!!!!!!!!!! >>

> >

>

> _________________________________________________________________

> Optimize your Internet experience to the max with the new MSN Premium

> Internet Software. http://click.atdmt.com/AVE/go/onm00200359ave/direct/01/

>

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

>

[Guest guest]

Hi,

I have not written for awhile and am not completely up to date with

the list, but I thought that I would jump into this one regarding

Pfeiffer.

We have been treating our 11 year old daughter na for several

years now, but only started with Pfeiffer this past December. We are

very happy with Dr. and the whole organization, and feel that

it has been worth the time and effort to go there as we had not been

able to obtain this quality of service in New York.

As a quick background history:

We had been looking for sources of mercury, when the information

regarding Thimerosal in the Hep B shot came out in July 1999.

We immediately began trying to detox and did some DMSA chelation with

local doctors, eventually taking on the Andy Cutler approach in July

2000.

We did this consistently for almost 3 years, stopping in May 2003.

Our daughter has been severely impaired, but has continued to improve

over the past several years.

Like many people, we have a long complex list of therapies,

treatments and interventions, so it is often hard to say that any

specific thing had a specific effect or benefit, but we do feel that

chelation for mercury has been a success, and that now the type of

treatment we are begining to get at Pfeiffer is what we need.

So far, the two specific things to come out of our visit to Pfeiffer

that we are working on are:

Pyroluria, zinc deficiency & copper/zinc imbalance

Gut blockages as evidenced by X-rays

Of all the people that we have sought help from, Dr was the

first to prescribe the X-ray evaluation, rather that recommend prunes

and fiber.

We have now started Enemas and suppositories + Milk of Magnesia and

Miralax to try to normalize bowel movements. na has been

constipated since infancy and although bowel movements improved with

chelation, she is still far from regular.

We had been supplementing with Zinc, but now have a more coordinated

formulation. I had never encountered kryptopyrrole or pyroluria in

my research, but I wonder how many kids show the presence of this in

their urine. From what I have gathered so far, this genetic

condition would essentially explain why na was more succeptible

to thimerosal.

Anyway, we are happy that we finally went to Pfeiffer, and are

optomistic for the future. Without going too much into detail

regarding pyroluria, or the studies with LSD and schitzophrenia, it

seems odd to me that this is not a test in normal evaluations or in

the DAN protocol. Do other people have experience with this

diagnosis or treatment? I would have thought that anything which is

suspected and treatable would be in the first round of tests.

Joe Marciano

> I would like to hear some other parents experiences w/ Pfieffer.

>

>

[Guest guest]

Dr. Woody McGinnis talked about it at a conference in Calgary last August.

They think aprox. 50 % of our kids ( in Down kids it is supposed to be 70%,

Schizophrenia 60%,

Alcoholism 40%, ADHD 30%) have that problem.

It is very hard to test for because the sample has to be within 24 hours at the

laboratory.

Some people talked about light sensitivity of the sample and wrapping it into

aluminium foil and cooling packs to get better

results. Kryptopyrrole is breaking down very fast and time is of the essence to

get it to the laboratory.

There was some talk about using zinc, selenium and other anti-oxidants to

counter the negative effects.

Does anybody have more information on this?

Carsten

[ ] Re: Pfeiffer

Hi,

I have not written for awhile and am not completely up to date with

the list, but I thought that I would jump into this one regarding

Pfeiffer.

We have been treating our 11 year old daughter na for several

years now, but only started with Pfeiffer this past December. We are

very happy with Dr. and the whole organization, and feel that

it has been worth the time and effort to go there as we had not been

able to obtain this quality of service in New York.

As a quick background history:

We had been looking for sources of mercury, when the information

regarding Thimerosal in the Hep B shot came out in July 1999.

We immediately began trying to detox and did some DMSA chelation with

local doctors, eventually taking on the Andy Cutler approach in July

2000.

We did this consistently for almost 3 years, stopping in May 2003.

Our daughter has been severely impaired, but has continued to improve

over the past several years.

Like many people, we have a long complex list of therapies,

treatments and interventions, so it is often hard to say that any

specific thing had a specific effect or benefit, but we do feel that

chelation for mercury has been a success, and that now the type of

treatment we are begining to get at Pfeiffer is what we need.

So far, the two specific things to come out of our visit to Pfeiffer

that we are working on are:

Pyroluria, zinc deficiency & copper/zinc imbalance

Gut blockages as evidenced by X-rays

Of all the people that we have sought help from, Dr was the

first to prescribe the X-ray evaluation, rather that recommend prunes

and fiber.

We have now started Enemas and suppositories + Milk of Magnesia and

Miralax to try to normalize bowel movements. na has been

constipated since infancy and although bowel movements improved with

chelation, she is still far from regular.

We had been supplementing with Zinc, but now have a more coordinated

formulation. I had never encountered kryptopyrrole or pyroluria in

my research, but I wonder how many kids show the presence of this in

their urine. From what I have gathered so far, this genetic

condition would essentially explain why na was more succeptible

to thimerosal.

Anyway, we are happy that we finally went to Pfeiffer, and are

optomistic for the future. Without going too much into detail

regarding pyroluria, or the studies with LSD and schitzophrenia, it

seems odd to me that this is not a test in normal evaluations or in

the DAN protocol. Do other people have experience with this

diagnosis or treatment? I would have thought that anything which is

suspected and treatable would be in the first round of tests.

Joe Marciano

> I would like to hear some other parents experiences w/ Pfieffer.

>

>

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

[Guest guest]

Recently I posted something regarding Pfeiffer, the

and SCD board.

/message/103519

I would just like to further comment on it.

There are lawsuits against the pharmaceutical companies because of

the possible vaccine-autism connection. I have no idea how many, but

the potential damage from these and more potential lawsuits could be

astronomical. Please see this message I posted recently.

/message/103519

and also message 104086

In order to steer people away from these lawsuits, it seems there is

an effort to divert people from those that have spoken publicly on

the possible vaccine-autism connection, especially DAN doctors and

GFCF people. Many people have different approaches for helping

autistic kids, and we need to look at the difference between them and

DAN doctors and the GFCF people. Basically people in the DAN and

GFCF movement have spoken publicly on the vaccines, and have made a

lot of sense. The others haven't spoken publicly. And when they do

so on their websites, it is often done in such a way that those

follow their extremism would never be taken seriously by the

public. For example, Rimland has testified before congress and has

spoken a lot in the media. And Karyn Seroussi I believe has appeared

on 60 Minutes, in magazines, etc. She advocates a GFCF diet, often

with modifications. But lately there have been a lot of alternatives

to GFCF, often where some form of dairy is considered acceptable, and

different reasons are given for why.

Also, take for example Dana. Now I have dialogued with her over the

past year and she is very nice. But if I recall correctly, she has 4

kids, homeschools them, is a lawyer, has quite an extensive website,

and spends a phenomenal amount of time on the lists just answering

questions. Why?

Pfeiffer it seems is another attempt to divert people from DAN

doctors. I took my son to Pfeiffer last year. They do not follow

DAN protocol as I understand it. Their methods are different from

regular DAN doctors. If their primary purpose is to divert people

from the DAN movement, it makes me question the science.

> Dr. Woody McGinnis talked about it at a conference in Calgary last

August.

> They think aprox. 50 % of our kids ( in Down kids it is supposed to

be 70%, Schizophrenia 60%,

> Alcoholism 40%, ADHD 30%) have that problem.

> It is very hard to test for because the sample has to be within 24

hours at the laboratory.

> Some people talked about light sensitivity of the sample and

wrapping it into aluminium foil and cooling packs to get better

> results. Kryptopyrrole is breaking down very fast and time is of

the essence to get it to the laboratory.

> There was some talk about using zinc, selenium and other anti-

oxidants to counter the negative effects.

>

> Does anybody have more information on this?

>

> Carsten

>

>

[Guest guest]

I'm lost. What's the point of this post?

Best,

Lora

_________________________________________________________________

Take off on a romantic weekend or a family adventure to these great U.S.

locations. http://special.msn.com/local/hotdestinations.armx

[Guest guest]

I have never been to Pfieffer, althought I would love the

opportunity to have Allie evaluated there. I suppose Dr. Walsh could

answer this concern the best, but my thought is that Pfieffer having

an alternative method does not mean their primary purpose is

diversion from DAN! any more than Andy's methodology is purposed to

divert from DAN! His primary purpose is to heal the kids. The fact

that the method might differ is secondary. I am currently reading

the DAN! Biomedical Assessment Options and realize that it will

never apply across the board to every person with autism. I'm

thankful for any group out there that can help any child, whether

they agree with everyone else or not. Seems to me that the more

methods we have, the better the chance at putting all the puzzle

pieces together.

Debi

> Pfeiffer it seems is another attempt to divert people from DAN

> doctors. I took my son to Pfeiffer last year. They do not follow

> DAN protocol as I understand it. Their methods are different from

> regular DAN doctors. If their primary purpose is to divert people

> from the DAN movement, it makes me question the science.

>

>

>

[Guest guest]

In a message dated 2/23/04 5:03:52 PM, stralinchey2@... writes:

<< Dana,

Well, I'm not sure how much time you spend on the lists, but you

certainly do post many messages. And your website is very

comprehensive, it must have been quite an investment of time.

Most people with four kids are run ragged. I have only one child

with ASD, and he requires a lot of attention. Yet you have four

children, two on the spectrum, homeschool them, do (or have done)

DTT/VB, work, etc. It just seems difficult to imagine. >>

,

I don't know what you're trying to accomplish with this, but it is really

unwelcome here. Dana is one of the great resources of this group and the least

she deserves is thanks for her efforts. How she spends her time or manages her

family is not remotely your concern.

Nell

[Guest guest]

>if the primary purpose of an

> intervention is to steer people away from pursuing lawsuits, if

> Pfeiffer is run by a pharmaceutical company and they are purposely

> not disclosing it, don't people have the right to know?

-- What does this mean? What evidence is there that Pfeiffer has been

set up to steer people away from lawsuits? Is Bill Walsh a stooge of

Big Pharma or is this just an absurd and scurrilous line peddled by

some sour DAN doctor?

I very much doubt Pfeiffer was set up by a drug company as its

protocols emphasise orthomolecular medicine rather than drugs.

BTW: I don't follow the Pfeiffer protocol or the DAN protocol.

Steve

[Guest guest]

I've got to concur strongely with Steve here as I have met Bill Walsh

and found him to be a real honorable man. I don't agree with all of the

ideas he has but his dedication and honesty shouldn't be in question.

[ ] Re: Pfeiffer

>if the primary purpose of an

> intervention is to steer people away from pursuing lawsuits, if

> Pfeiffer is run by a pharmaceutical company and they are purposely

> not disclosing it, don't people have the right to know?

-- What does this mean? What evidence is there that Pfeiffer has been

set up to steer people away from lawsuits? Is Bill Walsh a stooge of

Big Pharma or is this just an absurd and scurrilous line peddled by

some sour DAN doctor?

I very much doubt Pfeiffer was set up by a drug company as its

protocols emphasise orthomolecular medicine rather than drugs.

BTW: I don't follow the Pfeiffer protocol or the DAN protocol.

Steve

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

[Guest guest]

If you do a search you will find that their parent company is a

biomedical firm, stocks traded. I researched them when I first

started researching autism to see if they are legit. If I can find

the info, I'll post it.

Debi

> -- What does this mean? What evidence is there that Pfeiffer has

been

> set up to steer people away from lawsuits?

[Guest guest]

I think the corp which helped create Pfeiffer is Bio-Logic

Corporation. If this is correct, here is their website. I can't

remember if Bio-Logic is part of a larger corp or not.

Not to be dismissive, but even if there are other corps/for-profit

issues at work it doesn't mean they're out to get autism people. Of

course, everyone is intitled to their own feelings/thoughts/opinions.

http://www.bio-logic.com/index.html

Debi

> If you do a search you will find that their parent company is a

> biomedical firm, stocks traded. I researched them when I first

> started researching autism to see if they are legit. If I can find

> the info, I'll post it.

>

> Debi

>

>

> > -- What does this mean? What evidence is there that Pfeiffer has

> been

> > set up to steer people away from lawsuits?

[Guest guest]

I find this post to be very interesting. There is absolutely no

mention of Pfeiffer Treatment center or Health Research Institute in

any annual report, 10K or 10Q. Whoever posted this must have done

some serious digging because I can't see any possible connections

between these two organizations.

> > If you do a search you will find that their parent company is a

> > biomedical firm, stocks traded. I researched them when I first

> > started researching autism to see if they are legit. If I can

find

> > the info, I'll post it.

> >

> > Debi

> >

> >

> > > -- What does this mean? What evidence is there that Pfeiffer

has

> > been

> > > set up to steer people away from lawsuits?

[Guest guest]

> And as far as DAN protocol, you are absolutely right, not all

> treatments work for all kids. However, if the primary purpose of

an

> intervention is to steer people away from pursuing lawsuits, if

> Pfeiffer is run by a pharmaceutical company and they are purposely

> not disclosing it, don't people have the right to know?

>

>

>

Then you can say that Andy Cutler is also hired by some

pharmaceutical company as I am so tired from waking up at night that

I can't find time and forces for lawsuits... LOL

[Guest guest]

> Well, I'm not sure how much time you spend on the lists, but you

> certainly do post many messages.

I post when I might have helpful info. I generally do not post

otherwise.

> And your website is very

> comprehensive, it must have been quite an investment of time.

Thanks for the compliment. My husband helped me set it up about 3

years ago. When I set it up, it contained mostly links from my

bookmarks and copies of messages I had posted on various message

boards. Since then, every time I find a link which might be helpful,

I bookmark it and when I have time I include it on my site. I have

also written many pages since then, usually on the weekends when I

have a little time.

> Most people with four kids are run ragged. I have only one child

> with ASD, and he requires a lot of attention.

Four kids can actually be easier than one. They play together, they

don't require me all the time, and in fact many times they tell me to

go away LOL

Of course this does not necessarily mean I am not " run ragged " !

Everyone needs a break, an outlet, whatever. Some people read,

others knit, still others play basketball, some watch Oprah, I work

on the computer. This is my " me " time, but I like that I can give

something back.

>> Yet you have four

> children, two on the spectrum,

I *had* two on spectrum. They are no longer on spectrum, they are

just delayed in language.

>> homeschool them, do (or have done)

> DTT/VB, work, etc. It just seems difficult to imagine.

Homeschool is easier than fighting the public school, at least in my

opinion.

Work is one form of outlet for me, it gives me a daily break where I

can talk to other adults about non-child issues. Helps keep me sane.

The people who I find difficult to imagine, are the ones who are very

politically active. There are several on this message board alone.

Plus there are several who have started support groups, either

locally or online [or both]. Many have groups PLUS are politically

active. Where do they find the time? It is well beyond my

capability LOL

> And as far as DAN protocol, you are absolutely right, not all

> treatments work for all kids.

My son required an alternative protocol.

However, if the primary purpose of an

> intervention is to steer people away from pursuing lawsuits, if

> Pfeiffer is run by a pharmaceutical company and they are purposely

> not disclosing it, don't people have the right to know?

My primary disagreement with Pfeiffer is that they sell the

supplements directly, and they compound the supplements all together

as one. Then the parents many times discover that something about

the compounded supplement is not working with their child, but they

can't separate it to find the offending one/s. And they are

discouraged from just going to a local source to buy them.

Also, it many times appears to me that both DAN and Pfeiffer

basically have their own standard protocol that they seem to use for

EVERY child. They may tweak it a little, but the standard seems the

same [and both are rather expensive]. I believe that if I had used a

DAN doctor or Pfeiffer, that my child would not be recovered, because

he needed something different.

Just my cursory understanding of Pfeiffer is that in fact it is very

similar to DAN in all the areas which I find relevant, altho not

exactly the same.

I don't know about the allegations you mention above, and I don't

really care. *IF* Pfeiffer is helping kids, then *in general* that

is a good thing. Certainly better, in my opinion, than telling

parents what the pedneuro told me, that my son basically had no hope

of much improvement, would be in an institution by puberty unless we

were lucky and he qualified for a group home, and oh by the way, here

are some drugs for him [which he did not need, even at that time, and

I refused].

I don't know if people have a *right* to know certain information,

but I believe that if a person asks, s/he should receive a competent

and accurate answer.

Dana

[Guest guest]

Dana--I completely agree with you re: Pfeiffer..One size does not fit all..and

the supplement issue too..BTW,,I read most all of your posts and admire your

work so much...I have an older child, 11 next week,,,,I do my biomedical

research AND political research because she was SO injured So long ago that the

healing is harder....Your work helps me too for ideas on her health.....

C.

danasview <danasview@...> wrote:

> Well, I'm not sure how much time you spend on the lists, but you

> certainly do post many messages.

I post when I might have helpful info. I generally do not post

otherwise.

> And your website is very

> comprehensive, it must have been quite an investment of time.

Thanks for the compliment. My husband helped me set it up about 3

years ago. When I set it up, it contained mostly links from my

bookmarks and copies of messages I had posted on various message

boards. Since then, every time I find a link which might be helpful,

I bookmark it and when I have time I include it on my site. I have

also written many pages since then, usually on the weekends when I

have a little time.

> Most people with four kids are run ragged. I have only one child

> with ASD, and he requires a lot of attention.

Four kids can actually be easier than one. They play together, they

don't require me all the time, and in fact many times they tell me to

go away LOL

Of course this does not necessarily mean I am not " run ragged " !

Everyone needs a break, an outlet, whatever. Some people read,

others knit, still others play basketball, some watch Oprah, I work

on the computer. This is my " me " time, but I like that I can give

something back.

>> Yet you have four

> children, two on the spectrum,

I *had* two on spectrum. They are no longer on spectrum, they are

just delayed in language.

>> homeschool them, do (or have done)

> DTT/VB, work, etc. It just seems difficult to imagine.

Homeschool is easier than fighting the public school, at least in my

opinion.

Work is one form of outlet for me, it gives me a daily break where I

can talk to other adults about non-child issues. Helps keep me sane.

The people who I find difficult to imagine, are the ones who are very

politically active. There are several on this message board alone.

Plus there are several who have started support groups, either

locally or online [or both]. Many have groups PLUS are politically

active. Where do they find the time? It is well beyond my

capability LOL

> And as far as DAN protocol, you are absolutely right, not all

> treatments work for all kids.

My son required an alternative protocol.

However, if the primary purpose of an

> intervention is to steer people away from pursuing lawsuits, if

> Pfeiffer is run by a pharmaceutical company and they are purposely

> not disclosing it, don't people have the right to know?

My primary disagreement with Pfeiffer is that they sell the

supplements directly, and they compound the supplements all together

as one. Then the parents many times discover that something about

the compounded supplement is not working with their child, but they

can't separate it to find the offending one/s. And they are

discouraged from just going to a local source to buy them.

Also, it many times appears to me that both DAN and Pfeiffer

basically have their own standard protocol that they seem to use for

EVERY child. They may tweak it a little, but the standard seems the

same [and both are rather expensive]. I believe that if I had used a

DAN doctor or Pfeiffer, that my child would not be recovered, because

he needed something different.

Just my cursory understanding of Pfeiffer is that in fact it is very

similar to DAN in all the areas which I find relevant, altho not

exactly the same.

I don't know about the allegations you mention above, and I don't

really care. *IF* Pfeiffer is helping kids, then *in general* that

is a good thing. Certainly better, in my opinion, than telling

parents what the pedneuro told me, that my son basically had no hope

of much improvement, would be in an institution by puberty unless we

were lucky and he qualified for a group home, and oh by the way, here

are some drugs for him [which he did not need, even at that time, and

I refused].

I don't know if people have a *right* to know certain information,

but I believe that if a person asks, s/he should receive a competent

and accurate answer.

Dana

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

[Guest guest]

Hi,

We got some useful information from Pfeiffer. There was that bag of

supplements that my son wouldn't take and now they compound some of

their protocols. A child that my daughter is working with received

supplements separately and are adding them in and taking them out to

figure out which is causing a problem. The biggest thing that Pfeiffer

did for us is introduce us to the fact that there are actual biomedical

problems. At the time this possibility was never mentioned to me or the

ten or so families I " interviewed " at the bus pickup for our special ed

day camp. And they were seeing all the top physicians and

psychiatrists. None of them were actually getting any help. There was

mostly a lot of different opinions about diagnoses and all the parents

were run ragged in this process. The day (after seeing Pfeiffer) I gave

my son a supplement that contained copper and he completely lost it and

regressed a few years, a light went on. I understood in a way that

words don't describe.

[Guest guest]

Just to give an update-Pfeiffer called tonight, We got our appointment set

for February 8 and I am so excited. It was a nice pick me up tonight.

did better on bus today but not in the house. He started yelling at

the top of his lungs in anger over nothing and grabbed my wrists (which is

his choice of aggression) and got beet red in the face. Then complained of

a headache (which I always think is from the yelling) but he never got this

red in the face before. So what do you think. The only thing brand new is

the magnesium. Should I wait this out or stop it again. He ate usual

things for lunch except a pear was included. Yesterday it was 2 small

oranges. Could this be the phenol intolerance going on? Thanks Eileen

[Guest guest]

> the magnesium. Should I wait this out or stop it again.

Try removing it again for a day or two, keep everything else the same,

see if you notice anything.

He ate usual

> things for lunch except a pear was included. Yesterday it was 2 small

> oranges. Could this be the phenol intolerance going on?

My son did not tolerate pears except with Zyme Prime enzyme.

He did NOT tolerate oranges, no matter which enzyme I gave. Only ALA

chelation removed his orange/green intolerance.

Dana

[Guest guest]

Is he in pain when he get angry? My son is 7 years old (50 lbs). When my went

through a low dosage protocol (25mg or 50mg per 4hours, a 3 day round), he was

happy when he was on DMSA. But he was in pain and got cranky, sometimes

experienced some excruciating pain when he was off DMSA. As a result, he was

very angry or was crying when he could not tolerate the pain.

Later on, we realized his ability of getting out the mobilized mercury was low.

He needs a longer time to flush out the mobile mercury. We tried several kinds

of combination, different feeding time frame (e.g., 25mg DMSA+100mg ALA (use it

one time), 50mg DMSA + 200mg ALA (use this combination, twice a day for 7

days)). Finally, we settled down with 100mg of DMSA (twice a day (8:00 am and

4:00 pm, taken with an empty stomach, six days) for the first round of a large

dosage (200mg, 300mg, 8:00am and 4:00 pm, taken with an empty stomach, twice a

day). We let my son rest for one day before he took vitamin and mineral

supplements (formulated especially for autistic children). Something in the

mineral/vitamin stirred up mercury in my son's body. On day 3 of

vitamin/mineral feeding, my started to experience pain. We had to stop feeding

of mineral/vitamin on day 5. On that night, I had to put my son on DMSA again

(100mg per 8 hours). He will be off DMSA tonight (6 days of mobile mercury

flushing chelation). I will let my son rest for 2 weeks.

If you use the AC protocol, you need to listen to the AC experts here to see if

they have any suggestion for you.

>

> My son is an undermythelator who is currently having very bad " rages " . He is

10. I think it is due to excessive histamine. There is no doc nearby to treat

him. Am considering going to the Pfeiffer center in IL. Does anyone have any

thoughts or suggestions? Thanks.

>

[Guest guest]

Maybe you could try the supplements they recommend first? There is a chart

available...I believe (but can't be 100% sure) that it's right on the Pfeiffer

website. : )

>

> My son is an undermythelator who is currently having very bad " rages " . He is

10. I think it is due to excessive histamine. There is no doc nearby to treat

him. Am considering going to the Pfeiffer center in IL. Does anyone have any

thoughts or suggestions? Thanks.

>

[Guest guest]

,

Was he happy, or drugged?

>

>

> Before son's DMSA chelation, I did use benadryl to stabilize my son. 2

teaspoons of it lasted a whole day. My son was happy all the day. I don't

believe benadryl can handle the mobilized mercury.

>

>

>

[Guest guest]

What I meant he could act like normal kids without effective communication. No

more unpredicatable angry burst and pain he experienced at that time. He felt

happy based on the facial expression. Abother plus, he wanted to play with us.

Based on his weight and age at that time, he could take 2 teaspoons of benadryl

per 4-6 hours as needed. 2 teaspoons a day was way below the suggested limit.

> >

> >

> > Before son's DMSA chelation, I did use benadryl to stabilize my son. 2

teaspoons of it lasted a whole day. My son was happy all the day. I don't

believe benadryl can handle the mobilized mercury.

> >

> >

> >

>

[Guest guest]

At that time, I was looking for a chelating agent with minimum side effects. My

was allegic to peanut, MSG, etc. The key ingredient in Benadryl contains a

tertiary amino structure which is capable of chelating free mercury (Hg 2+).

However, it might not have sufficient strength to pull mercury from sulfur atoms

in the protein. Anyway, Benadryl worked great on my son at that time although it

was found for other applications (e.g., histamine blocker).

> >

> > My son is an undermythelator who is currently having very bad " rages " . He is

> >10. I think it is due to excessive histamine. There is no doc nearby to treat

> >him. Am considering going to the Pfeiffer center in IL. Does anyone have any

> >thoughts or suggestions? Thanks.

> >

>

>

>

>

>

>

>

>