: unsolicitated opinion, some more ;-)

[Guest guest]

>

> Hi ,

>

> To make a long story short, we have been swamped with just helping

folks do SCD.

> Maybe there should be a section on our website about other

treatments.

> Anyone want to volunteer to write it?

>

> As soon as I wrote this, I realized how difficult it would be to

> assess the different treatments. How can we tell the difference

> between a phony treatment and a good one....It sure would take a

lot

> of work... I think that right now, we need more active volunteers

to

> run SCD. Only when we have more helpers can we even consider

branching

> out.....

>

> Mimi

>

Well, in light of the fact that there IS a lot of work on *just*

btvc scd, and pecanbread is sort of an intro list, I don't see that

you would need to change what you are trying to focus on here; just

have a 'go-to' area for folks asking *OT* q's. (referring to

your 'assessing qualities of other treatments' comment above. Man,

the whole DAN! movement can't even do that - how are you supposed

to?). I mean, there ARE other lists for all sorts of stuff. And most

people find their way to them as needed. With time...an extremely

precious commodity.

But here's two things that might help if taken under consideration:

1) Create a file with the names of/links to other lists, and their

main focus (with perhaps the obligatory " pecanbread does not endorse

these but if you are looking for further info on xyz consider

checking these out " ). Something along those lines. Sending q's or

people to other lists immeadiately when OT topics pop up would save

list " clutter " here, without anyone feeling like they have been shut

down, shut up or shut off.

2) Creating an mission statement mssg, or similar that can be

referred to when OT comes up repeatedly (either from the same person

or on the same topic). Yes, that info is in your opening page under

the description of what pecanbread is (like most yahoogroups), but

look at how often it happens. Recently, oxalates and chelation being

examples. Or enzymes. Allergies. Whatever. Having a standard, " Well,

we don't cover that - here's why - but check out FILE OT if still

interested " message would take the heat off pecanbread WITHOUT

making the person asking to feel like a pariah.

And poor Carol F. would not have to go into spasms feeling like

she's defending Elaine's memory via this list, 'cause that is not

supposed to be what's it's all about, right? :-)

I am not cutting on you, Carol ;-) I am trying to save you and

others potential angst. I get the need for focus here, and do not

devalue an intro btvc scd list with set parameters. At all. But per

our conversation on this very topic long ago I think my two

suggestions have merit, as OT is STILL an issue here.

Having an intro list (and intro not AT ALL meant in a disparaging

way) with an OT file would afford the moderators and members alike a

phenomenal opportunity to SAVE PRECIOUS TIME IF IT IS NEEDED for a

kid. Jeez, had plain ol' gluten/casein-free been effective for us

I'd still be on just GFCFKids. Nothing wrong with sticking with what

works IF it does the job completely. Just not the case for everyone.

People are made to feel comfortable and *safe* here, and that's

terrific, especially if it's their first foray into such a *weird*

idea as nutrition/dietary choices really having an impact on one's

health - not just MedFest. Awesome. Keep that flavor.

But blanket statements/claims, or " Well, Elaine said X, so that's

it forever and ever amen. " or other closed comments can *appear*

insensative (or worse, silly). Where would Elaine's family be if she

hadn't done some digging for HER kid, right? People like answers to

their q's - but it doesn't have to be pecanbread's job to do OT

suff. Giving your OT askers some options while gently redirecting

them while they are talking HERE could be a worthwhile endeavor.

imo. And should not require Herculean effort, b/c it seems like you

guys are close to maxed out, right?

I'm finished yapping ;-)

Thanks Mimi for allowing me the opportunity to comment -

appreciated. Your replies have been very thoughtful. Tho, since this

is now OT, lol, I am open to offlist contact if you want :-)

-christine

[Guest guest]

I'm just wondering what was wrong with the thread in the first place that would

necessitate any changes? Since the website briefly mentions a chelating effect

of SCD, why would it be a problem to ask for clarification and discussion?

-

chrsdonohue wrote:

>

> Hi ,

>

> To make a long story short, we have been swamped with just helping

folks do SCD.

> Maybe there should be a section on our website about other

treatments.

> Anyone want to volunteer to write it?

>

> As soon as I wrote this, I realized how difficult it would be to

> assess the different treatments. How can we tell the difference

> between a phony treatment and a good one....It sure would take a

lot

> of work... I think that right now, we need more active volunteers

to

> run SCD. Only when we have more helpers can we even consider

branching

> out.....

>

> Mimi

>

Well, in light of the fact that there IS a lot of work on *just*

btvc scd, and pecanbread is sort of an intro list, I don't see that

you would need to change what you are trying to focus on here; just

have a 'go-to' area for folks asking *OT* q's. (referring to

your 'assessing qualities of other treatments' comment above. Man,

the whole DAN! movement can't even do that - how are you supposed

to?). I mean, there ARE other lists for all sorts of stuff. And most

people find their way to them as needed. With time...an extremely

precious commodity.

But here's two things that might help if taken under consideration:

1) Create a file with the names of/links to other lists, and their

main focus (with perhaps the obligatory " pecanbread does not endorse

these but if you are looking for further info on xyz consider

checking these out " ). Something along those lines. Sending q's or

people to other lists immeadiately when OT topics pop up would save

list " clutter " here, without anyone feeling like they have been shut

down, shut up or shut off.

2) Creating an mission statement mssg, or similar that can be

referred to when OT comes up repeatedly (either from the same person

or on the same topic). Yes, that info is in your opening page under

the description of what pecanbread is (like most yahoogroups), but

look at how often it happens. Recently, oxalates and chelation being

examples. Or enzymes. Allergies. Whatever. Having a standard, " Well,

we don't cover that - here's why - but check out FILE OT if still

interested " message would take the heat off pecanbread WITHOUT

making the person asking to feel like a pariah.

And poor Carol F. would not have to go into spasms feeling like

she's defending Elaine's memory via this list, 'cause that is not

supposed to be what's it's all about, right? :-)

I am not cutting on you, Carol ;-) I am trying to save you and

others potential angst. I get the need for focus here, and do not

devalue an intro btvc scd list with set parameters. At all. But per

our conversation on this very topic long ago I think my two

suggestions have merit, as OT is STILL an issue here.

Having an intro list (and intro not AT ALL meant in a disparaging

way) with an OT file would afford the moderators and members alike a

phenomenal opportunity to SAVE PRECIOUS TIME IF IT IS NEEDED for a

kid. Jeez, had plain ol' gluten/casein-free been effective for us

I'd still be on just GFCFKids. Nothing wrong with sticking with what

works IF it does the job completely. Just not the case for everyone.

People are made to feel comfortable and *safe* here, and that's

terrific, especially if it's their first foray into such a *weird*

idea as nutrition/dietary choices really having an impact on one's

health - not just MedFest. Awesome. Keep that flavor.

But blanket statements/claims, or " Well, Elaine said X, so that's

it forever and ever amen. " or other closed comments can *appear*

insensative (or worse, silly). Where would Elaine's family be if she

hadn't done some digging for HER kid, right? People like answers to

their q's - but it doesn't have to be pecanbread's job to do OT

suff. Giving your OT askers some options while gently redirecting

them while they are talking HERE could be a worthwhile endeavor.

imo. And should not require Herculean effort, b/c it seems like you

guys are close to maxed out, right?

I'm finished yapping ;-)

Thanks Mimi for allowing me the opportunity to comment -

appreciated. Your replies have been very thoughtful. Tho, since this

is now OT, lol, I am open to offlist contact if you want :-)

-christine

---------------------------------

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Yahoo! Autos.

[Guest guest]

, you obviously put in a lot of time addressing the idea of a venue for OT

autism

related topics that could pertain to SCD. The thought that you may may be

volunteering

for this project it is really appreciated .

> I mean, there ARE other lists for all sorts of stuff. And most

> people find their way to them as needed. With time...an extremely

> precious commodity.

You are correct, We can find general and specialty Internet autism groups, 2183

to be

exact just on Yahoo alone.

http://groups.yahoo.com/search?query=autism&submit=Search

>

> But here's two things that might help if taken under consideration:

> 1) Create a file with the names of/links to other lists, and their

> main focus (with perhaps the obligatory " pecanbread does not endorse

> these but if you are looking for further info on xyz consider

> checking these out " ).

Seven years ago I joined a Latex Allergy support list and frequently

b/c of MCS (chemical sensitivity) reported reacting to synthetic rubber. I

didn't understand

the difference between real and synthetic rubber and after two warnings was

kicked off.

They won't let me return. Some people are stricter than others about leeway on

discussions.

> Recently, oxalates and chelation being examples.

The oxalate issue is a new " post-Elaine " unproven protocol and attracts people

wishing to

combine LOD with SCD. We have to clarify the differences, risks and possible

consequences as the TLO list doesn't always.. We did this as well with the BED

and do

when people want to retain GFCF rules on SCD.

> And poor Carol F. would not have to go into spasms feeling like

> she's defending Elaine's memory via this list, 'cause that is not

> supposed to be what's it's all about, right? :-)

Hmm, being 76, makes spasms a vague memory LOL!

Elaine is more than a personal memory. Without her there would be no SCD. Dr.

Haas did

not give many details. SCD was his baby but she raised it and you are right, I

will report

any kidnapping attempts.

.. Mimi founded the list when she learned SCD was helping autism. Sheila has

scientific

background which caused Elaine to place trust in her. Patti is experienced with

seizure but

can not be with us right now and Charlene and I are adult veterans on the diet.

Think of us

as a choir having different voices

>

> I am not cutting on you, Carol ;-)

That's good.

Pecanbread was founded to support Elaine's SCD and her approved amendments for

ASD;

I never presumed expertise on autism, I am here because Elaine invited me and I

did not

create guideline #7 in our files about not dicussing other stuff but cite it

when required.

Re: Trying to stick to or clarify what Elaine intended so her legacy is carried

forward, does

not mean my feet are cast in cement. When convincing validated research appears

that

enables new possibilites on SCD for ASD, why would I object? In fact I have been

taking

part in it.

My Mom left me a modest inhertitance so I am not poor. I have devoted most of my

time

to SCD for seven years but it likely will be more welcome on an adult SCD group

Carol F.

SCD 7 years, celiac

[Guest guest]

Dear Carol, I enjoyed reading your post and only was surprised about the last

sentence. I'm a newcomer to this list but since I have a child who needs SCD

and I need all the help I can get, I would ask you to please stay on this list!

I'm sure that we all need your knowledge and experience, and your posts are a

touchstone for the real SCD. I feel fortunate to have way to connect with you

by email... so please do stay on this list.

mother of Virya, 16, autism, LKS, apraxia, aphasia, etc., SCD since March 07

and seeing results!

carolfrilegh wrote:

, you obviously put in a lot of time addressing the idea of a venue for OT

autism

related topics that could pertain to SCD. The thought that you may may be

volunteering

for this project it is really appreciated .

> I mean, there ARE other lists for all sorts of stuff. And most

> people find their way to them as needed. With time...an extremely

> precious commodity.

You are correct, We can find general and specialty Internet autism groups, 2183

to be

exact just on Yahoo alone.

http://groups.yahoo.com/search?query=autism&submit=Search

>

> But here's two things that might help if taken under consideration:

> 1) Create a file with the names of/links to other lists, and their

> main focus (with perhaps the obligatory " pecanbread does not endorse

> these but if you are looking for further info on xyz consider

> checking these out " ).

Seven years ago I joined a Latex Allergy support list and frequently

b/c of MCS (chemical sensitivity) reported reacting to synthetic rubber. I

didn't understand

the difference between real and synthetic rubber and after two warnings was

kicked off.

They won't let me return. Some people are stricter than others about leeway on

discussions.

> Recently, oxalates and chelation being examples.

The oxalate issue is a new " post-Elaine " unproven protocol and attracts people

wishing to

combine LOD with SCD. We have to clarify the differences, risks and possible

consequences as the TLO list doesn't always.. We did this as well with the BED

and do

when people want to retain GFCF rules on SCD.

> And poor Carol F. would not have to go into spasms feeling like

> she's defending Elaine's memory via this list, 'cause that is not

> supposed to be what's it's all about, right? :-)

Hmm, being 76, makes spasms a vague memory LOL!

Elaine is more than a personal memory. Without her there would be no SCD. Dr.

Haas did

not give many details. SCD was his baby but she raised it and you are right, I

will report

any kidnapping attempts.

.. Mimi founded the list when she learned SCD was helping autism. Sheila has

scientific

background which caused Elaine to place trust in her. Patti is experienced with

seizure but

can not be with us right now and Charlene and I are adult veterans on the diet.

Think of us

as a choir having different voices

>

> I am not cutting on you, Carol ;-)

That's good.

Pecanbread was founded to support Elaine's SCD and her approved amendments for

ASD;

I never presumed expertise on autism, I am here because Elaine invited me and I

did not

create guideline #7 in our files about not dicussing other stuff but cite it

when required.

Re: Trying to stick to or clarify what Elaine intended so her legacy is carried

forward, does

not mean my feet are cast in cement. When convincing validated research appears

that

enables new possibilites on SCD for ASD, why would I object? In fact I have been

taking

part in it.

My Mom left me a modest inhertitance so I am not poor. I have devoted most of my

time

to SCD for seven years but it likely will be more welcome on an adult SCD group

Carol F.

SCD 7 years, celiac

---------------------------------

Ahhh...imagining that irresistible " new car " smell?

Check outnew cars at Yahoo! Autos.

[Guest guest]

>

> Dear Carol, I enjoyed reading your post and only was surprised about the last

sentence.

I'm a newcomer to this list but since I have a child who needs SCD and I need

all the help I

can get, I would ask you to please stay on this list! I'm sure that we all need

your

knowledge and experience, and your posts are a touchstone for the real SCD. I

feel

fortunate to have way to connect with you by email... so please do stay on this

list.

>

> mother of Virya, 16, autism, LKS, apraxia, aphasia, etc., SCD since March

07 and

seeing results!

>

The detail in Donahue's post leads me to believe she couid contribute a

lot to the

list, more than I, She has had lots of SCD experience. I have asked the

moderators to

consider adding her to their team. Of course it can entail spending up to four

hours a day

on Pecanbread. She would be an ideal person to deal with OT, since my ability in

that area

exists on some topics but is limited.

I don't know whether to be happy or sad that Elaine's version of SCD does work

well for

me:-)

Carol F.