Moderators HELP

[Guest guest]

said on PB post: " If the spirit of the conversation is aimed at helping

people succeed on SCD, I hope the occasional tangents aren't taken as directing

people away from SCD. "

Yet, this is exactly what Carol and I witness happening. Sometimes making Carol

not even feel qualified to help ASD children, when she more than is qualified.

Causing me to get gruff replies...from mothers who don't think that SCD could be

enough. I am left alone, scrambling to prove SCD on a SCD list serve. Truly

not nice at times. I have been the fall guy more than once on PB because of

this. People think we are " unique " and " lucky " . Maybe we are...but that much

so, for all five of us to loose symptoms of heavy metals, bad gut bugs, and

more??

MOST Of us come to SCD with lots of interventions and diets swimming around in

our heads. WE are desperate. WE are scared. WE want a cure. WE want the

turmoil's of autism to stop.

The Dan! movement does not help with this confusion. Most of us parents have

googled...until our eyes are googled out.

WE are desperate to fix our suffering ASD children. If we are ASD ourselves we

want the suffering part of ASD to stop. It is hard to think that SCD could be

all that needs to be done when we are in this state of need. Yet, most of this

doubt, is because there is not enough talk on how SCD works.

Moderators, PB needs more talk about how SCD naturally CHELATES, how Elaine

saved a man with heavy metal poisoning, how SCD lowers the toxic load and helps

with the LPS problem...helps with seizures....helps with the child getting

better nutrition and more.

Our daughter did not have the success that she had without doing SCD fanatically

for 18 months. If we had done chelation, HBOT or other treatments, she could

have become sicker. The MtD doctors are certain of it.

Face it, ASD and MtD both are so misunderstood and some things are not safe to

do. Many books have warned that HBOT and chelation might not be good for

anybody. Not just my MtD child. Talk about these things, truly confuse the

heck out of us when we are new. Yet, it is hard for me to just sit

there...hearing how " wonderful " it is...without sharing the warnings that have

been given to us.

I remember being new to PB and truly feeling like I was going to have a panic

attack. We had just gotten diagnosis of autism, seizures....and CD. I didn't

know that there was so much to know. Some of these conversations make the

newbie feel that they need to do more than SCD...when SCD is the only thing that

they should be concentrating on.

With SCD so many of the problems that DAN! scrambles to FIX, all VANISH. My

daughter is proof of this... and so am I. As well many other fanatical SCD ASD

kids. T from Long Island was the first to have success with ASD

kids....this was WITHOUT DAN!, HBOT and fancy interventions, and without fancy

testing.

WE did not stray from SCD until 18 months into the fanatical diet. There where

strange things happening that showed us that SCD would not be able to fix. Like

undigested foods in her diaper after adhering to the book for over a year. She

ended up having Pancreatic Insufficiency that past doctors had missed. She

ended up having significant metabolic disorder that increases her calorie needs.

WE are not quitting SCD with our little girl. She is able to succeed with SCD

by only straying 10 to 15%. THIS is with help from doctor reassuring that

everything she eats illegal turns into monosaccharide in the gut and nothing is

left to ferment with the help of prescription enzymes. This straying is not

with candy or treats. It is to get her through the night, without IV nutrition

or G tube. THIS is with Medical HELP...and not kitchen science.

I would not suggest that others try over the counter enzymes to do this. Elaine

did not want us exchanging the SCD diet with enzymes...so that we could cheat.

If this does not work, we will be back to fanatical.

When we where new to SCD, I was told to do SCD fanatically...and if after a

time...if we need more than SCD to look into it. At the time I had a long list

of DAN! things that " needed " to be done. SCD fixed most of it...my list of

" DAN! to do's " didn't need to be implemented. I personally realize that some do

not have success with SCD (Elaine knew this too) and that other things may be

needed. My daughter is proof of this. But DAN! protocol, was not one of the

things needed to stop her deliriums, seizures and end her moderately severe

autism.

Bottom line, maybe more COULD trust SCD more, if the moderators would help us to

understand it better....and if SCD is not enough, we should go to other list

serves to talk about alternative....if after doing fanatical SCD we even have

to. I belong to other list serves now...so that I can do just this. That way I

don't mess with the success of the newbie, that might be fortunate enough to

need " just " SCD.

Thank you.

Antoinette and the Zoo

[Guest guest]

Antoinette,

I am confused by this post as you were providing most of the " hooks " into the

OT discussion -- were you not?

You have been urging us to consider other factors such as mito and pancreatic

insufficiency quite a bit & discussions have followed. Now personally, I have

learned much from you and will be following up on your info and am glad you

posted all this stuff & started the discussions. I am just confused why after

the fact you are suggesting that you often witness this desperate talk of other

interventions that shouldn't be permitted. If the discussions are not

permitted, then should the info be posted in the first place?

I took a quick glance at the thread and nobody was recommending chelation as a

therapy (just discussion of mercury as a factor which should be fare game since

this board supports a mercury LPS connection) and nobody was promoting HBOT

(just warning that it causes yeast because the DAN doctors aren't warning about

this).

So anyway, I am confused about what was wrong with engaging in a discussion

with you about topics that you brought up (but I promise not to do it again if

it is not allowed!).

-

Bunce wrote:

said on PB post: " If the spirit of the conversation is aimed at

helping people succeed on SCD, I hope the occasional tangents aren't taken as

directing people away from SCD. "

Yet, this is exactly what Carol and I witness happening. Sometimes making Carol

not even feel qualified to help ASD children, when she more than is qualified.

Causing me to get gruff replies...from mothers who don't think that SCD could be

enough. I am left alone, scrambling to prove SCD on a SCD list serve. Truly not

nice at times. I have been the fall guy more than once on PB because of this.

People think we are " unique " and " lucky " . Maybe we are...but that much so, for

all five of us to loose symptoms of heavy metals, bad gut bugs, and more??

MOST Of us come to SCD with lots of interventions and diets swimming around in

our heads. WE are desperate. WE are scared. WE want a cure. WE want the

turmoil's of autism to stop.

The Dan! movement does not help with this confusion. Most of us parents have

googled...until our eyes are googled out.

WE are desperate to fix our suffering ASD children. If we are ASD ourselves we

want the suffering part of ASD to stop. It is hard to think that SCD could be

all that needs to be done when we are in this state of need. Yet, most of this

doubt, is because there is not enough talk on how SCD works.

Moderators, PB needs more talk about how SCD naturally CHELATES, how Elaine

saved a man with heavy metal poisoning, how SCD lowers the toxic load and helps

with the LPS problem...helps with seizures....helps with the child getting

better nutrition and more.

Our daughter did not have the success that she had without doing SCD fanatically

for 18 months. If we had done chelation, HBOT or other treatments, she could

have become sicker. The MtD doctors are certain of it.

Face it, ASD and MtD both are so misunderstood and some things are not safe to

do. Many books have warned that HBOT and chelation might not be good for

anybody. Not just my MtD child. Talk about these things, truly confuse the heck

out of us when we are new. Yet, it is hard for me to just sit there...hearing

how " wonderful " it is...without sharing the warnings that have been given to us.

I remember being new to PB and truly feeling like I was going to have a panic

attack. We had just gotten diagnosis of autism, seizures....and CD. I didn't

know that there was so much to know. Some of these conversations make the newbie

feel that they need to do more than SCD...when SCD is the only thing that they

should be concentrating on.

With SCD so many of the problems that DAN! scrambles to FIX, all VANISH. My

daughter is proof of this... and so am I. As well many other fanatical SCD ASD

kids. T from Long Island was the first to have success with ASD

kids....this was WITHOUT DAN!, HBOT and fancy interventions, and without fancy

testing.

WE did not stray from SCD until 18 months into the fanatical diet. There where

strange things happening that showed us that SCD would not be able to fix. Like

undigested foods in her diaper after adhering to the book for over a year. She

ended up having Pancreatic Insufficiency that past doctors had missed. She ended

up having significant metabolic disorder that increases her calorie needs.

WE are not quitting SCD with our little girl. She is able to succeed with SCD by

only straying 10 to 15%. THIS is with help from doctor reassuring that

everything she eats illegal turns into monosaccharide in the gut and nothing is

left to ferment with the help of prescription enzymes. This straying is not with

candy or treats. It is to get her through the night, without IV nutrition or G

tube. THIS is with Medical HELP...and not kitchen science.

I would not suggest that others try over the counter enzymes to do this. Elaine

did not want us exchanging the SCD diet with enzymes...so that we could cheat.

If this does not work, we will be back to fanatical.

When we where new to SCD, I was told to do SCD fanatically...and if after a

time...if we need more than SCD to look into it. At the time I had a long list

of DAN! things that " needed " to be done. SCD fixed most of it...my list of " DAN!

to do's " didn't need to be implemented. I personally realize that some do not

have success with SCD (Elaine knew this too) and that other things may be

needed. My daughter is proof of this. But DAN! protocol, was not one of the

things needed to stop her deliriums, seizures and end her moderately severe

autism.

Bottom line, maybe more COULD trust SCD more, if the moderators would help us to

understand it better....and if SCD is not enough, we should go to other list

serves to talk about alternative....if after doing fanatical SCD we even have

to. I belong to other list serves now...so that I can do just this. That way I

don't mess with the success of the newbie, that might be fortunate enough to

need " just " SCD.

Thank you.

Antoinette and the Zoo

[Guest guest]

I can see why you are confused. I did alert many about MtD and PI. It

worries me that so many ASD kids are being missed like our duaghter

was.

Yet, I truly think that if we where told more about how SCD

works...that most of us would not worry so much. Becasue we would know

not to worry....you see I worry....that is why I wrote what I did.

Yes...I admit the PI was a tangent that SCD can not fix. But SCD

helps...even for undiagnosed PI...so I wasn't off the mark too much. I

think I will just shut up....before I get in so deep I vanish into the

murk.

Antoinette

[Guest guest]

>

> Antoinette,

>

> I am confused by this post as you were providing most of the " hooks " into

the OT

discussion -- were you not?

>

,

Before this escalates into a disruptive debate let me repeat my opinion. Let the

list be

whatever it needs to be and whatever the moderators and owner would lke it to

be, but

explain that clearly on the home page and cxhange the rule prohibiting topic

currently

considerednon relevant.

Of that happens I doubt that I will paticipate at all due to a lack of

qualification, not a lack

of caring.

This is one adult that definitely needs parental guidance LOL.

Repeating:

As to " modifying the diet with protocols added from other diets, one of Elaine's

closest

associates who was saved from radical surgery by SCD says:

" There will always be people who, after knowing about SCD for no more than about

10

minutes, suddenly think they know more than both Elaine and Dr Haas combined.

Anybody spending time on a website focused on " Modified SCD " is getting just

what they

want, so don't worry about them. "

Carol F.

SCD 7 years

[Guest guest]

Hi Antoinette and ,

<< said on PB post: " If the spirit of the conversation is aimed

at helping people succeed on SCD, I hope the occasional tangents

aren't taken as directing people away from SCD. " >>

Occasional tangents that mesh with SCD are fine on pecanbread as long

as they are labelled OT before the subject title. This allows people

to skip over them. Discussing topics that conflict with SCD and SCD

legality are not allowed. This is to protect those new to SCD and to

avoid confusion.

<<> Moderators, PB needs more talk about how SCD naturally CHELATES,

how Elaine saved a man with heavy metal poisoning, how SCD lowers the

toxic load and helps with the LPS problem...helps with

seizures....helps with the child getting better nutrition and more.>>

Discussions of how SCD naturally chelates is a perfect example of an

occasional tangent that should be labelled OT. Reporting results is

fine. There are plenty of discussions in the archives of these

subjects Antoinette. To find them try using the search function at

http://health.groups.yahoo.com/group/pecanbread/messages

The purpose of this list is to discuss implementation of SCD. I am

not saying that these topics can't be discussed but in the interest

of newbiesand for those who aren't dealing with these issues thay are

off the topic/purpose of the list. Marking them clearly as OT before

the subject allows newbies to skip it. This diet can be overwhelming

and all the OT discussions can confuse matters more.

<<Bottom line, maybe more COULD trust SCD more, if the moderators

would help us to understand it better....>>

Myself and the other moderators do our best to help with questions

relevant to SCD and to peripheral SCD questions: supplements,

treatments etc.. Mimi and others have done a wonderful job answering

many questions on the pecanbread website. It is designed to help

people better understand how to start the diet, things that may

happen when you start, parent updates etc..

http://pecanbread.com/

I am sorry if you feel we are not doing enough to help people trust

SCD, but we are doing the best we can.

Sheila, SCD Feb. 2001, UC 23 yrs, PCOD 22yrs

mom of and