Speak

[Guest guest]

just our experience...

DD kate took it for two days...she is 3 and previously on 4 ProEFA, 2

ProEPA, 1 high gamma E, and Super-Nu-Thera....did very well, and has

exhibited good progress.

began 2 SPEAK per day for two days and reverted to an infant...i was

told by her special ed teacher and PT that she was wobbly, and would

follow commands but when told the same command appeared to not

understand the command and would stare blankly. she screamed bloody

murder at the drop of a hat ( for a little girl that rarely sheds a

tear and is constantly laughing!) she also developed some serious

bruising on her legs!

kate has 3 year old receptive lanuage, and her hypotonia was decreased

to the point that she was

almost jogging prior to SPEAK...this stuff is POISON! after 3 days of

being off of it, she is still not back to her norm, and i have

discontinued her E as she is probably has TOXIC levels.

needless to say, we are discontinuing this supplement, as i too, read

up on the dangerous levels of E and the resulting consequences of

hypervitaminosis...

i hope that this is reported before someone is seriously injured, or

even dead because of seizure activity or other physical debilities.

we are going back to our tried and TRUE supplementation!(minus the E

for a while)...i hope she bounces back quickly!

many thanks,

kris

[Guest guest]

I also agree with Liz and . I find it odd that we are not

asking the MDs and specialists involved with our children more about

these issues. I looked on the ProEFA bottle this morning and it

said adult dosage = 2 capusles. We are talking about giving our

children 4 capsules. Is there any long term studies because I would

like to know more about the omegas as well.

My son Skylar has hypotonia, sensory issues, gut issues, carnitine

deficiency, global dyspraxia, and who knows what else!!! We are

working with UCSF (great research facility) for his metabolic

issues. He is seeing a metabolic geneticist, pediatric neurologist,

genetic counselor and also a nutritionist seperately. I have

submitted the Speak info. to all above to help me understand. I

have been giving Skylar 2-3 caps a day for the last 10 days and seen

wonderful results! Where Skylar wasn't able to communicate because

he can't talk (peek-a boos is about it) and his limb dyspraxia (plus

numbness in hands) make it hard for sign language. He would use his

eyes to look at something he wanted. Speak has helped him so much

in just one week Sky can sign more point to what he wants and he is

using some language. Truthfully if told I had to take him off of

this supplement, I think I would cry! We are in the VFG and

hopefully it will continue. I am sorry for those it had a reverse

effect on.

Ending this note, I have been told by experts that a carnitine

deficiency is usually the result of a malabsorption issue (secondary

deficiency). Noting the number of kids on this sight with carnitine

deficiencies, I'm begining to think fat malabsorption is fairly

common in our kids.

>

> I agree with Liz. We as parents should know what we are giving our

children regardless of the source. Especially this group.

> We " lab-rat our children " the moment we started supplementing with

omegas, never mind E.

>

> My daughter Kitty's response to E was much more apparent than her

response to the omegas. I thought I was following the " formula " and

my E ratio is approximately 2:1 (800 IU d-alpha plus what's in NN to

300 mg gamma. I only supplement once/day.) We are doing 2 SPEAK

1xday, which is lower in total E for her. The alpha helped diminish

sesnsory behavior and the gamma ignited a surge in her speech (I

added them at different times and that's what I observed.)

>

> Kitty is not part of a " subset of children with a rare fat

absorption issue " . We've had the labs done and she is not deficient

in anything. She has reflux which we treat with pepcid but no other

gut issues. She is not on any special diet other than our best

efforts to eat heathly as a family. We removed dairy for a couple of

months but observed no change, so she' back on it and there was no

regression. She's tall and a fit, actve child.

>

> My point is we are all just guessing here. I remember when I first

started reading these posts (and I have been " lurking " sine Oct

2006) that I just wanted someone to tell me what to give Kitty

without me having to experiment or figure it out because I didn't

know what to do on my own. I guess that's what we were hoping SPEAK

would do. But the fact that we are participating in a focus group

screams " experimental " . Maybe I would have a different response if

Kitty had a negative reaction.

>

> I applaud you all as parents who are doing the best you can for

your children. But there is no panacea for our kids.

>

[Guest guest]

What is the testing that needs to be done and who does it?

From: Janice <jscott@...>

Subject: Re: [ ] Re: SPEAK

Date: Friday, October 3, 2008, 4:27 PM

Disagree here.....

I think that most of the kids and others with global apraxia/dyspraxia are

DEFINATELY malabsorbing! Many remained undiagnosed unfortunately but why do fish

oils work anyway? They work because they body is not adequately processing food

that it is taking in. It is not properly digesting and absorbing nutrients into

the system. There have been plenty of studies on fish oils for kids with

dyspraxia and other learning disorders to bear the efficacy of this treatment

out. Google Stordy.... that research was done eons ago.

The people who have actually done the metabolic testing generally find out the

truth..... they discover that their child is generally perilously low on many

essential vitamins and nutrients. This means that you often need specialized

tests that are not available through the regular health plans but come out of

your own pocketbook. This is why physicians mostly do not adequately test. Now,

I am from Canada so it may be different in the US......

There is a scientific 'reason' behind dyspraxia. There is no magic here but we

need to investigate the science further and truly discover all of the different

elements that make up this disorder. I too did not realize that my 13 year old

was having malabsorption issues. But the proof is in the pudding.... do the

testing and you will see....

Now this is only my personal opinion from reading post after post.... on a

multiple of different boards that bear this out.....

Take care and don't mean to be argumentative I just want to be sure that

everyone gives testing a decent shot so that they can help their child as best

they can. I wasted many years thinking that there was truly nothing 'physically'

wrong with my son and that it was all neurological. This was a complete error on

my part and when we heal the body.... the mind can follow!

Janice

Mother of Mark, 13

[sPAM][childrensapr axianet] Re: SPEAK

Elena,

I liked your message, thank you for sharing it. By the way, my other

daughter's name is Elena, which I love, its a beautiful name.

I do have a question though for you and the group. You state that most

of our kids have malabsorption issues and other metabolic disorders. I

disagree, I think most of the kids on this list group do not have

metabolic and malabsorption issues. I think it would be interesting

to do a poll to count how many families on this list group have done

the testing and discovered such issues. Most of us who post are

regular participants and contributors, but there are I think 8 or 9

thousand members of this group. How many of those regularly post here?

A very small percentage of this group list responded to the request to

participate in the focus group as well as turning in the questionnaire

for the database that is using. Until we actually have a

count, no one knows the percentage of members whose children actually

have metabolic disorders and/or malabsorption issues along iwth their

apraxia, or just have apraxia with the soft signs (hypotonia, sensory

issues) like my daughter.

If people think its worth it, I'll look into how to get a poll set up

or something like that.

Lori

> >

> > I agree with Liz. We as parents should know what we are giving our

> children regardless of the source. Especially this group.

> > We " lab-rat our children " the moment we started supplementing

> with

> omegas, never mind E.

> >

> > My daughter Kitty's response to E was much more apparent than her

> response to the omegas. I thought I was following the " formula " and

> my E ratio is approximately 2:1 (800 IU d-alpha plus what's in NN to

> 300 mg gamma. I only supplement once/day.) We are doing 2 SPEAK

> 1xday, which is lower in total E for her. The alpha helped diminish

> sesnsory behavior and the gamma ignited a surge in her speech (I

> added them at different times and that's what I observed.)

> >

> > Kitty is not part of a " subset of children with a rare fat

> absorption issue " . We've had the labs done and she is not deficient

> in anything. She has reflux which we treat with pepcid but no other

> gut issues. She is not on any special diet other than our best

> efforts to eat heathly as a family. We removed dairy for a couple of

> months but observed no change, so she' back on it and there was no

> regression. She's tall and a fit, actve child.

> >

> > My point is we are all just guessing here. I remember when I first

> started reading these posts (and I have been " lurking " sine Oct

> 2006) that I just wanted someone to tell me what to give Kitty

> without me having to experiment or figure it out because I didn't

> know what to do on my own. I guess that's what we were hoping SPEAK

> would do. But the fact that we are participating in a focus group

> screams " experimental " . Maybe I would have a different response if

> Kitty had a negative reaction.

> >

> > I applaud you all as parents who are doing the best you can for

> your children. But there is no panacea for our kids.

> >

>

>

>

> ------------ --------- --------- ------

>

>

[Guest guest]

Part of the problem with assessing fat malabsorption in kids is the

testing. Kids do not generally have enough fat in diet to trip the

test. Does not mean they are not malabsorbing regardless.

[Guest guest]

Gretchen,

I believe that the confusion lie with your statements that you have

spoken to some of us on the phone, yet at the same time, you state

that it is not considered direct contact with the company.

Keep in mind that this type of reponse from you only lowers the

validity of pharmaomega/nourishlife as a professional company. It is

just truly puzzling the type of behavior and comments that have come

from you and the company. In my opinion, a company that prides itself

on ethics and high standards would bend over backwards to engage in

consumer outreach and take seriously these unusual negative

experiences, as well embrace these group of parents with company

support. Instead, we get told over and over again that what we shared

with you on the phone is not considered direct contact. Most other

companies would have sent us an email or a form in the mail for us to

fill out and to send back to the company so that this information is

collected for further investigation and research. It is a slap in the

face that I even need to engage in this explanation so that you can

understand why people have issues with your comments.

So, to address your statement, I am assuming that direct contact means

it has to be in writing to the company. I have been keeping a

database of each parent's posting of positive and negative experiences

along with the date of posting, names and email addresses. I can email

a formal letter to Nourishlife directly on behalf of the parents since

not everyone is reading the group list on a daily basis. Or, are you

then requesting that each one of us email the comapny directly about

our children's reactions?

It is very concerning that your company chooses not to investigate or

validate some of these children's experiences. Why would any ethical

company risk significant side effects to children with special needs

is beyond my understanding and I think that represents most of the

people's frustration with your lack of sensitivity in your postings.

Please clarify how you wish the information about our children's

experiences to be sent to the company, individually or as a group letter.

Lori

> > >

> > > Gretchen since you are clearly able to read the messages here -

> below

> > > is the message I sent to you in private. I don't know if you

> read it

> > > as I was just sent a message you sent to a member here and I had

> > > thought that the " blocked " message issue was clear in my message

> > > below.

> > >

> > > I find it outrageous that you are continuing to claim both here

> and

> > > behind the scenes that the company has not received any negative

> > > feedback as in my opinion this is false advertising. Phone

> calls and

> > > emails to you and the President of the company is not

> communicating

> > > with the company? Please be clear.

> > >

> > > If emailing and speaking with you and the president of the

> company is

> > > not communicating with the company, please let me/the rest of us

> know

> > > where we need to email the negative feedback because the

> > > info@ email I tried to send bounced back to me.

> > > Here's a copy I sent to Mark and Roy on 10/13/08:

> > >

> > > ----- Forwarded Message ----

> > > From: " MAILER-DAEMON@ " <MAILER-DAEMON@>

> > > kiddietalk@

> > > Sent: Monday, October 13, 2008 9:44:08 PM

> > > Subject: failure notice

> > >

> > > Hi. This is the qmail-send program at .

> > > I'm afraid I wasn't able to deliver your message to the following

> > > addresses.

> > > This is a permanent error; I've given up. Sorry it didn't work

> out.

> > >

> > > <info@>:

> > > 69.130.36.242 does not like recipient.

> > > Remote host said: 550 5.7.1 Unable to relay for

> > > info@

> > > Giving up on 69.130.36.242.

> > >

> > >

> > > This group is for support and for parents or professionals that

> want

> > > to share support. Many of us, myself included, are devastated by

> the

> > > dramatic regression of our child on SPEAK. I am not playing.

> Again

> > > how does one submit " negative reports " to your company?

> > >

> > > Below is the message I sent to you and others from your

> company. In

> > > it I have amongst other things my son's regression stated. Do

> you

> > > want me to be more clear and get reports from the professionals

> that

> > > work with him? I know a few that are very upset to say the

> least.

> > >

> > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> > > ----- Forwarded Message ----

> > > From:

[Guest guest]

Lori

Please be accurate in your statements. We have investigated EVERY

person about whom we've heard an usual or negative experience.

I appreciate you describing EXACTLY what we have done and that you

have a high opinion of companies who " prides itself on ethics and

high standards would bend over backwards to engage in consumer

outreach and take seriously these unusual negative experiences " .

That is precisely what has been DONE. Thank you. We cannot share

records with you.

I've provided company contact information multiple times.

Lori, what more can we do for you?

Sincerely,

Gretchen

> > > >

> > > > Gretchen since you are clearly able to read the messages

here -

> > below

> > > > is the message I sent to you in private. I don't know if

you

> > read it

> > > > as I was just sent a message you sent to a member here and I

had

> > > > thought that the " blocked " message issue was clear in my

message

> > > > below.

> > > >

> > > > I find it outrageous that you are continuing to claim both

here

> > and

> > > > behind the scenes that the company has not received any

negative

> > > > feedback as in my opinion this is false advertising. Phone

> > calls and

> > > > emails to you and the President of the company is not

> > communicating

> > > > with the company? Please be clear.

> > > >

> > > > If emailing and speaking with you and the president of the

> > company is

> > > > not communicating with the company, please let me/the rest

of us

> > know

> > > > where we need to email the negative feedback because the

> > > > info@ email I tried to send bounced back to me.

> > > > Here's a copy I sent to Mark and Roy on 10/13/08:

> > > >

> > > > ----- Forwarded Message ----

> > > > From: " MAILER-DAEMON@ " <MAILER-DAEMON@>

> > > > kiddietalk@

> > > > Sent: Monday, October 13, 2008 9:44:08 PM

> > > > Subject: failure notice

> > > >

> > > > Hi. This is the qmail-send program at .

> > > > I'm afraid I wasn't able to deliver your message to the

following

> > > > addresses.

> > > > This is a permanent error; I've given up. Sorry it didn't

work

> > out.

> > > >

> > > > <info@>:

> > > > 69.130.36.242 does not like recipient.

> > > > Remote host said: 550 5.7.1 Unable to relay for

> > > > info@

> > > > Giving up on 69.130.36.242.

> > > >

> > > >

> > > > This group is for support and for parents or professionals

that

> > want

> > > > to share support. Many of us, myself included, are

devastated by

> > the

> > > > dramatic regression of our child on SPEAK. I am not

playing.

> > Again

> > > > how does one submit " negative reports " to your company?

> > > >

> > > > Below is the message I sent to you and others from your

> > company. In

> > > > it I have amongst other things my son's regression stated.

Do

> > you

> > > > want me to be more clear and get reports from the

professionals

> > that

> > > > work with him? I know a few that are very upset to say the

> > least.

> > > >

> > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> > > > ----- Forwarded Message ----

> > > > From:

[Guest guest]

Dear Gretchen,

I am a moderator for this group and part of the SPEAK focus group.

Albeit a quiet moderator and due to computer issues not an overly

active member but I want to make it absolutely clear that I posted on

the response page of SPEAK that my son had NEGATIVE reactions to

SPEAK and NO ONE contacted me. How is that, <snip> " investigated

EVERY person about whom we've heard an usual or negative

experience. " ? My son had negative behavior responses AND racing

heart when we went above two capsules a day. That to me is

negative. *NOTE* I just visited my response page on PharmaOmega. My

second responses were missing. I wrote them and then saved them well

over a week ago. I received the 'saved successfully' notice and re-

read what I wrote. Now today that post is missing? Maybe that's why

you are not receiving negative responses, because they are saved and

then some how disappear? I posted again almost exactly what I wrote

before. I'm sure computer issues occur but I sincerely hope my posts

will not disappear again.

I also will be posting on the next SPEAK response page that today my

son's SLP told me he has REGRESSED and LOST GROUND. I had been aware

of him apparently losing all his past tense words. I even thought to

post here and ask if it is age appropriate but instead I asked his

SLP. NO, it's that he has LOST GROUND. We have to go back and have

him practice repeating the present tense in a sentence and then the

past tense in a sentence. This is something he finished over eight

months ago! Am I devastated to think that possibly something I gave

my son is causing him to regress? Or that I stopped giving him

something that was helping him? I can't even BEGIN to tell you the

depth of that emotion.

Is all of this unequivocally caused by taking one capsule of SPEAK

per day? Is it a normal bump in the road? A regression before a

surge? I don't know but at this time I don't feel comfortable

risking it, especially given the growing number of regressions I'm

reading about.

I would dearly like to hear from on this. Has she posted at

all? What is happening with the people who were giving Pro-EFA with

high Gamma E? What's happening with 's son? Is he taking

SPEAK?

Bottom line, At this time I will not continue with SPEAK unless

someone I trust with my son's future convinces me differently.

I'd also like to say that I have known since sometime in 2003. I have seen

her repeatedly approve messages that were against her beliefs or simply things

she didn't agree with. I've seen her even approve a few that were personal

attacks against her because she didn't believe as they did. is without a

doubt out-spoken, emotional, passionate and firm in her beliefs but given the

past history I find it very, very difficult to believe that she deleted any of

your posts.

Lastly I would like you to explain your post on another group in

regard to a a person who posted that they had read scary posts on

. To quote you, " There have been some 'scary'

posts on another site. That's a good word to use. We have talked with

the families and are relieved ourselves. What we were hearing 3rd

party (from the group list) and what really happened were

different. " Personally I'd like to hear what REALLY happened.

Sincerely,

McCann

>

> Lori

>

> Please be accurate in your statements. We have investigated EVERY

> person about whom we've heard an usual or negative experience.

>

> I appreciate you describing EXACTLY what we have done and that you

> have a high opinion of companies who " prides itself on ethics and

> high standards would bend over backwards to engage in consumer

> outreach and take seriously these unusual negative experiences " .

>

> That is precisely what has been DONE. Thank you. We cannot share

> records with you.

>

> I've provided company contact information multiple times.

>

> Lori, what more can we do for you?

>

> Sincerely,

> Gretchen

>

[Guest guest]

(

if you are seeing regressions, the SLP is seeing regressions,

in my opinion stop at once. It's not like fish oils where most of us

found out for ourselves (with much happiness) if they regress due to

running out of the oils or changing formulas (of fish oils) they

bounce back in a day on the right oils. With this megadosage of

vitamin E and K unknown path some of us are unfortunate enough to be

on -for some of us it's been around a month and it's a painfully slow

journey and still not back.

I find that I can't stop hugging Tanner. I hug him while he is

sleeping and when he comes in from school and while he's eating

dinner. And I hug him knowing that his regression doesn't appear to

matter enough to even be considered a " negative feedback " At least

if it helps protect another child there's something good that comes

out of this horror.

I just feel so guilty and I love him SO much -I can't believe I gave

him the capsules that I now feel (for him anyway) were poison. I'm

so sorry about the overwhelming amounts of others here who reported

regression or other negative side effects as well. If in fact

Gretchen is posting on other groups we know that it won't be long

till those parents see the same as we have here -most of the children

were just on 2 capsules which is " only " 500 IUs -and you are saying

you saw what you did on one capsule?

Who do we trust when you talk about trust? Who knows anything about

children on megadosages of vitamin E and K? As I tried to tell

everyone most here were on the 1/1 ratio of alpha and gamma and the

formula of SPEAK (based on science -not our group I was told by

Gretchen) was not at all the norm of this group. In fact I don't

know if anyone was using vitamin K before other than perhaps a few

spoke with? I have asked around and even have spoken to some

of the doctors who wrote papers on vitamin E and nobody seems to be

able to tell me anything other than " due to the metanalysis ( you can

find here http://www.emedicine.com/Med/topic2384.htm ) we no longer

recommend dosages over 400 IUs even in adults. I am not aware of any

studies with children "

And we know children's bodies are different than adults

(how many adults die from taking a cold pill?!!)

" While there is little evidence that children's OTC cold medicines are

effective, it is becoming apparent that the drugs often put kids in danger.

Earlier this year, the FDA issued a warning advising that over-the-counter cold

and cough medicines should not be given to children under two. The warning came

after a 2007 study conducted by the Centers for Disease Control found that

between 2004 and 2005, 1,500 children under the age of 2 had been injured by

common over-the-counter decongestants and antihistamines. A second study by FDA

safety reviewers reached similar conclusions. Their research found that from

1969 to 2006, at least 54 children died after taking over the counter

decongestants, and 69 died after taking over-the-counter antihistamines. "

http://www.pharmaceuticalonline.com/article.mvc/OTC-Cold-Medication-Age-Recommen\

dations-0001?VNETCOOKIE=NO

How come we weren't told of the even " possible " risks of vitamin

poisoning? I keep thinking of this as Tanner didn't regress until

after the vomiting and severe diarrhea (day 5). And I think of those

headaches where I gave him that Advil and he went to sleep for

hours. I helped get the focus group and I put my own baby on it. I

thought I was doing a good thing. How did I let this happen? You

know how I typically analyze everything like crazy. This was just so

under the radar because wasn't just a pediatrician and

researcher and parent of an apraxic child here -but I considered her a

friend. I trusted her. Tanner met her too and he trusted her.

Tanner was a vitamin E cheerleader as you'll find in the archives -

but again he was on a different dosage and formula. And besides the

vitamin E for him wasn't the dramatic surges -the fish oils were

that.

All we can do is what we did prior to get our children back to where

they were -and pray! Not all that regressed took as long to bounce

back- and in fact there are a few that went right to the 2 ProEFA/ to

1 ProEPA mix and are doing really well. In my opinion for anyone

that has the regressions on SPEAK the best thing is to keep using the

fish oils. Over a few months the fish oils deplete the vitamin E.

And back to other groups...I find it hard to believe that the

overwhelming negative reports found here would be any different at

any other group which will mean even more upset parents. You can't

cover up the truth forever. Gretchen actually posted this?

" There have been some 'scary'

> posts on another site. That's a good word to use. We have talked

with

> the families and are relieved ourselves. What we were hearing 3rd

> party (from the group list) and what really happened were

> different. "

That's actually pretty disgusting to me. So she's relieved to hear

that my son who was talking fine regressed back years to groping -to

where we have to help him with some sounds he's known since preschool

in isolation? Relieved to know that there's an overwhelming number

of negative vs positive posts here? To me only a monster would use a

word like " relieved "

Nobody should mess with children -but even more special needs

children. To take a line from Palin the difference between a special

needs mom and a pit-bull? Lipstick.

On top of that a " possible " missing negative report on the speak

forum -was there projection in the messages here from Gretchen who

keeps talking (over and over and over) about her " blocked " messages

here?

Hugs to you and your baby . We have to have faith. We've

helped them get to where they were before- we'll do it again. I just

have to believe that too. We all have to. For the sake of our

children who are innocent -and VERY special.

=====

[Guest guest]

Hi

I'll contact the person who handles the Focus Group. We are just now

receiving our 2nd round of questions from the group.

Our contact info:

1-800-471-0358

or

info@...

Gretchen

>

> Dear Gretchen,

> I am a moderator for this group and part of the SPEAK focus group.

> Albeit a quiet moderator and due to computer issues not an overly

> active member but I want to make it absolutely clear that I posted

on

> the response page of SPEAK that my son had NEGATIVE reactions to

> SPEAK and NO ONE contacted me. How is that, <snip> " investigated

> EVERY person about whom we've heard an usual or negative

> experience. " ? My son had negative behavior responses AND racing

> heart when we went above two capsules a day. That to me is

> negative. *NOTE* I just visited my response page on PharmaOmega.

My

> second responses were missing. I wrote them and then saved them

well

> over a week ago. I received the 'saved successfully' notice and re-

> read what I wrote. Now today that post is missing? Maybe that's

why

> you are not receiving negative responses, because they are saved

and

> then some how disappear? I posted again almost exactly what I

wrote

> before. I'm sure computer issues occur but I sincerely hope my

posts

> will not disappear again.

>

> I also will be posting on the next SPEAK response page that today

my

> son's SLP told me he has REGRESSED and LOST GROUND. I had been

aware

> of him apparently losing all his past tense words. I even thought

to

> post here and ask if it is age appropriate but instead I asked his

> SLP. NO, it's that he has LOST GROUND. We have to go back and

have

> him practice repeating the present tense in a sentence and then the

> past tense in a sentence. This is something he finished over eight

> months ago! Am I devastated to think that possibly something I

gave

> my son is causing him to regress? Or that I stopped giving him

> something that was helping him? I can't even BEGIN to tell you the

> depth of that emotion.

>

> Is all of this unequivocally caused by taking one capsule of SPEAK

> per day? Is it a normal bump in the road? A regression before a

> surge? I don't know but at this time I don't feel comfortable

> risking it, especially given the growing number of regressions I'm

> reading about.

>

> I would dearly like to hear from on this. Has she posted

at

> all? What is happening with the people who were giving Pro-EFA

with

> high Gamma E? What's happening with 's son? Is he taking

> SPEAK?

>

> Bottom line, At this time I will not continue with SPEAK unless

> someone I trust with my son's future convinces me differently.

>

> I'd also like to say that I have known since sometime in

2003. I have seen her repeatedly approve messages that were against

her beliefs or simply things she didn't agree with. I've seen her

even approve a few that were personal attacks against her because

she didn't believe as they did. is without a doubt out-spoken,

emotional, passionate and firm in her beliefs but given the past

history I find it very, very difficult to believe that she deleted

any of your posts.

>

> Lastly I would like you to explain your post on another group in

> regard to a a person who posted that they had read scary posts on

> . To quote you, " There have been some 'scary'

> posts on another site. That's a good word to use. We have talked

with

> the families and are relieved ourselves. What we were hearing 3rd

> party (from the group list) and what really happened were

> different. " Personally I'd like to hear what REALLY happened.

>

> Sincerely,

> McCann

[Guest guest]

Hi

What more can we do? We have reached out and contacted every person

we have heard about (they are only on this group). Stating that we

are `doing nothing' is completely inaccurate. What more can we do?

How may we communicate this more clearly? I am sorry you don't see

my concern; I could easily stop engaging with this group. If we

follow your suggestion, what do we do about the 96% of people who

love this product?

The FDA does regulate supplements (we comply), and yes, they monitor

poorly made products. They have a good website. It's unfortunate

the science and expertise of this formula has become lost. Please

remember , this patented and licensed formula was developed by

medical professionals.

As I've said, we can't share our findings, positive or negative. I

do know that a lot of folks who are having great success do not care

to post messages here. Really unfortunate for the majority, and I

understand.

Using dietary supplements is a choice.

Sincerely,

Gretchen Vannice, MS, RD

PS If you read previous messages, it should clear up your

confusion.

> > > > > >

> > > > > > Gretchen since you are clearly able to read the messages

> > here -

> > > > below

> > > > > > is the message I sent to you in private. I don't know if

> > you

> > > > read it

> > > > > > as I was just sent a message you sent to a member here

and I

> > had

> > > > > > thought that the " blocked " message issue was clear in my

> > message

> > > > > > below.

> > > > > >

> > > > > > I find it outrageous that you are continuing to claim

both

> > here

> > > > and

> > > > > > behind the scenes that the company has not received any

> > negative

> > > > > > feedback as in my opinion this is false advertising.

Phone

> > > > calls and

> > > > > > emails to you and the President of the company is not

> > > > communicating

> > > > > > with the company? Please be clear.

> > > > > >

> > > > > > If emailing and speaking with you and the president of

the

> > > > company is

> > > > > > not communicating with the company, please let me/the

rest

> > of us

> > > > know

> > > > > > where we need to email the negative feedback because the

> > > > > > info@ email I tried to send bounced back to me.

> > > > > > Here's a copy I sent to Mark and Roy on 10/13/08:

> > > > > >

> > > > > > ----- Forwarded Message ----

> > > > > > From: " MAILER-DAEMON@ " <MAILER-DAEMON@>

> > > > > > kiddietalk@

> > > > > > Sent: Monday, October 13, 2008 9:44:08 PM

> > > > > > Subject: failure notice

> > > > > >

> > > > > > Hi. This is the qmail-send program at .

> > > > > > I'm afraid I wasn't able to deliver your message to the

> > following

> > > > > > addresses.

> > > > > > This is a permanent error; I've given up. Sorry it didn't

> > work

> > > > out.

> > > > > >

> > > > > > <info@>:

> > > > > > 69.130.36.242 does not like recipient.

> > > > > > Remote host said: 550 5.7.1 Unable to relay for

> > > > > > info@

> > > > > > Giving up on 69.130.36.242.

> > > > > >

> > > > > >

> > > > > > This group is for support and for parents or

professionals

> > that

> > > > want

> > > > > > to share support. Many of us, myself included, are

> > devastated by

> > > > the

> > > > > > dramatic regression of our child on SPEAK. I am not

> > playing.

> > > > Again

> > > > > > how does one submit " negative reports " to your company?

> > > > > >

> > > > > > Below is the message I sent to you and others from your

> > > > company. In

> > > > > > it I have amongst other things my son's regression

stated.

> > Do

> > > > you

> > > > > > want me to be more clear and get reports from the

> > professionals

> > > > that

> > > > > > work with him? I know a few that are very upset to say

the

> > > > least.

> > > > > >

> > > > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> > > > > > ----- Forwarded Message ----

> > > > > > From:

[Guest guest]

Gretchen,

Okay, let me try one more time to explain to you what I would like for

you to do. I would like for you to please answer my question!

My question was I can send a formal letter to Nourishlife directly on

behalf of the parents who have had their children react negatively to

speak or, it is required that each one of us email the comapny

directly as individuals about our children's reactions?

Lori

> >

> > Gretchen,

> > I believe that the confusion lie with your statements that you have

> > spoken to some of us on the phone, yet at the same time, you state

> > that it is not considered direct contact with the company.

> > Keep in mind that this type of reponse from you only lowers the

> > validity of pharmaomega/nourishlife as a professional company. It

> is

> > just truly puzzling the type of behavior and comments that have

> come

> > from you and the company. In my opinion, a company that prides

> itself

> > on ethics and high standards would bend over backwards to engage in

> > consumer outreach and take seriously these unusual negative

> > experiences, as well embrace these group of parents with company

> > support. Instead, we get told over and over again that what we

> shared

> > with you on the phone is not considered direct contact. Most other

> > companies would have sent us an email or a form in the mail for us

> to

> > fill out and to send back to the company so that this information

> is

> > collected for further investigation and research. It is a slap in

> the

> > face that I even need to engage in this explanation so that you can

> > understand why people have issues with your comments.

> >

> > So, to address your statement, I am assuming that direct contact

> means

> > it has to be in writing to the company. I have been keeping a

> > database of each parent's posting of positive and negative

> experiences

> > along with the date of posting, names and email addresses. I can

> email

> > a formal letter to Nourishlife directly on behalf of the parents

> since

> > not everyone is reading the group list on a daily basis. Or, are

> you

> > then requesting that each one of us email the comapny directly

> about

> > our children's reactions?

> >

> > It is very concerning that your company chooses not to investigate

> or

> > validate some of these children's experiences. Why would any

> ethical

> > company risk significant side effects to children with special

> needs

> > is beyond my understanding and I think that represents most of the

> > people's frustration with your lack of sensitivity in your

> postings.

> >

> > Please clarify how you wish the information about our children's

> > experiences to be sent to the company, individually or as a group

> letter.

> > Lori

[Guest guest]

Is this back and forth going on because is the only one with

company contact and others have simply reported here?

> > > > >

> > > > > Gretchen since you are clearly able to read the messages

> here -

> > > below

> > > > > is the message I sent to you in private. I don't know if

> you

> > > read it

> > > > > as I was just sent a message you sent to a member here and I

> had

> > > > > thought that the " blocked " message issue was clear in my

> message

> > > > > below.

> > > > >

> > > > > I find it outrageous that you are continuing to claim both

> here

> > > and

> > > > > behind the scenes that the company has not received any

> negative

> > > > > feedback as in my opinion this is false advertising. Phone

> > > calls and

> > > > > emails to you and the President of the company is not

> > > communicating

> > > > > with the company? Please be clear.

> > > > >

> > > > > If emailing and speaking with you and the president of the

> > > company is

> > > > > not communicating with the company, please let me/the rest

> of us

> > > know

> > > > > where we need to email the negative feedback because the

> > > > > info@ email I tried to send bounced back to me.

> > > > > Here's a copy I sent to Mark and Roy on 10/13/08:

> > > > >

> > > > > ----- Forwarded Message ----

> > > > > From: " MAILER-DAEMON@ " <MAILER-DAEMON@>

> > > > > kiddietalk@

> > > > > Sent: Monday, October 13, 2008 9:44:08 PM

> > > > > Subject: failure notice

> > > > >

> > > > > Hi. This is the qmail-send program at .

> > > > > I'm afraid I wasn't able to deliver your message to the

> following

> > > > > addresses.

> > > > > This is a permanent error; I've given up. Sorry it didn't

> work

> > > out.

> > > > >

> > > > > <info@>:

> > > > > 69.130.36.242 does not like recipient.

> > > > > Remote host said: 550 5.7.1 Unable to relay for

> > > > > info@

> > > > > Giving up on 69.130.36.242.

> > > > >

> > > > >

> > > > > This group is for support and for parents or professionals

> that

> > > want

> > > > > to share support. Many of us, myself included, are

> devastated by

> > > the

> > > > > dramatic regression of our child on SPEAK. I am not

> playing.

> > > Again

> > > > > how does one submit " negative reports " to your company?

> > > > >

> > > > > Below is the message I sent to you and others from your

> > > company. In

> > > > > it I have amongst other things my son's regression stated.

> Do

> > > you

> > > > > want me to be more clear and get reports from the

> professionals

> > > that

> > > > > work with him? I know a few that are very upset to say the

> > > least.

> > > > >

> > > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> > > > > ----- Forwarded Message ----

> > > > > From:

[Guest guest]

Hi Lori

We welcome all communications (you don't need to ask permission).

We will continue to reach out and communicate with families, consult

with professionals, and respond accordingly. It's important that we

have direct contact with each family.

Gretchen

> > >

> > > Gretchen,

> > > I believe that the confusion lie with your statements that you

have

> > > spoken to some of us on the phone, yet at the same time, you

state

> > > that it is not considered direct contact with the company.

> > > Keep in mind that this type of reponse from you only lowers the

> > > validity of pharmaomega/nourishlife as a professional company.

It

> > is

> > > just truly puzzling the type of behavior and comments that have

> > come

> > > from you and the company. In my opinion, a company that prides

> > itself

> > > on ethics and high standards would bend over backwards to

engage in

> > > consumer outreach and take seriously these unusual negative

> > > experiences, as well embrace these group of parents with

company

> > > support. Instead, we get told over and over again that what we

> > shared

> > > with you on the phone is not considered direct contact. Most

other

> > > companies would have sent us an email or a form in the mail

for us

> > to

> > > fill out and to send back to the company so that this

information

> > is

> > > collected for further investigation and research. It is a slap

in

> > the

> > > face that I even need to engage in this explanation so that

you can

> > > understand why people have issues with your comments.

> > >

> > > So, to address your statement, I am assuming that direct

contact

> > means

> > > it has to be in writing to the company. I have been keeping a

> > > database of each parent's posting of positive and negative

> > experiences

> > > along with the date of posting, names and email addresses. I

can

> > email

> > > a formal letter to Nourishlife directly on behalf of the

parents

> > since

> > > not everyone is reading the group list on a daily basis. Or,

are

> > you

> > > then requesting that each one of us email the comapny directly

> > about

> > > our children's reactions?

> > >

> > > It is very concerning that your company chooses not to

investigate

> > or

> > > validate some of these children's experiences. Why would any

> > ethical

> > > company risk significant side effects to children with special

> > needs

> > > is beyond my understanding and I think that represents most of

the

> > > people's frustration with your lack of sensitivity in your

> > postings.

> > >

> > > Please clarify how you wish the information about our

children's

> > > experiences to be sent to the company, individually or as a

group

> > letter.

> > > Lori

>