Re: Negative comments on SPEAK supplments

[Guest guest]

Lori,

I have to agree with something Gretchen said a while back - this is

the supposedly only place where negative reports are being given.

While it's great to keep a thread in a neutral (non-company)

environment, it is more important to post any comments, positive or

negative, on THEIR site, in THEIR forum. Anything Gretchen reports

back can be considered hearsay, so members need to get on and say it

themselves... Sending private emails can't be proven, making unheard

calls can't be proven. Take her advice, and post your comments on the

speechtrial.com/forum board.

> Mon Sep 29, 2008 9:42 pm

> >

> Re: Speak supplement ?

>

> Hi ,

>

> We didn't have any seizures or signs of seizures like the other 3

> families that just posted but Tanner is 12 years old and 5 foot 6

> inches tall.

>

> Tanner started on Speak at 6 capsules plus I gave him 4 capsules of

> the high gamma tocopheroal because I was so afraid of regression as

> he did any time I attempted to raise the level of alpha E -so with

> the 1.500 IUs of alpha tocopheroal and the 600 mg of gamma

> tocopheroal plus the 800 extra of each he was on what I was not

aware

> a crazy too high dosage of vitamin E. For 5 days he was on that with

> no regression -but no surge either. On the 6th day he woke up at 4

> AM and was vomiting pretty much all morning with loose stools too. I

> thought he had a bug and kept him home from school and didn't give

> him any Speak or anything else. As the day went on he seemed better

> and even started eating again and seemed fine. I gave him only 3

> Speak that day.

>

> The next morning I only again gave him 3 Speak and nothing else. He

> went to school and seemed fine in the AM but the school called after

> lunch -it was a hot day and Tanner was outside playing basketball

and

> he felt like he was " going to puke " so I went to school and picked

> him up thinking once again it just had to do with the fact he had

> been sick the day before. And perhaps that is all it was. On the

> way home from his school I spoke to and she said only give

> him the Speak and not the extra vitamin E anymore. Tanner's

> regression started once I just put him onto the pure Speak. His

> speech got what I call " bumpy " pretty rapidly which is our first

sign

> of regression for him and I realized the dosage or formula of

vitamin

> E was all wrong for him.

>

> For the next week or so I put him on 4 Speak with 2 high gamma from

> Vitamin World which slowed the regression down -but each day it was

a

> bit worse. I know -why did we continue? Tanner wanted to try it as

> he was excited too about trying Speak. We were giving it time and I

> thought we could figure it out. I went out and bought an almost pure

> gamma but that seemed to make things even worse. Count another 3 or

> 4 days into trying different ratios of gamma with the formula. I

> even brought it down to 2 Speak, 2 ProEFA, 1 ProEPA, 2 of the almost

> pure gamma E...and one day with the high gamma...so much for making

> things easier!

>

> On the day we decided to stop (Tanner asked to stop) Tanner was

> standing out in our driveway wanting to tell me something before he

> left for school. He opened his mouth and started groping but nothing

> was coming out. Even just writing this now it horrifies me that I

> let it go on that long. He seemed apraxic again for the first time

> in years. Later that day I had a school meeting and the teacher told

> me that Tanner who is usually " talkative " in school with everyone

> didn't say a word almost all day. He became very quiet as he is very

> aware of his speech. The next day we went back to 4 ProEFA and 2

> ProEPA no vitamin E at all. but it took days till he was anywhere

> near where he was before and he's not 100 percent back in speech yet

> but I am not sure how long the vitamin E stays in the body.

>

> On one of the next days we went on a class trip and I drove to the

> Indian River (where I had to drag a net through God knows what and

> found out later there are " spotted eels "

> http://www.softscuba.com/pix/Altriethspottedeel.jpg in the Indian

> River lagoon!!!) with Tanner and other boys and girls in his class

> and while everyone was talking....I mean we found jelly fish and

> shrimp and baby flounder and a blow fish and a pipe fish -stuff that

> made me cringe for sure...Tanner was for the most part quiet. Not

> saying much of anything. He laughed -just didn't talk. On the way

> home 2 of the boys in my car asked Tanner why he was so quiet and he

> just shrugged.

>

> Clearly Speak is not the formula for Tanner. Based on what I read

> about vitamin E (which I have to say I didn't explore until after

> Tanner's regression unfortunately) I'm not comfortable keeping my

son

> on any type of mega dosage of vitamin E for extended periods of time

> anyway. He tested normal in vitamin E and clearly regressed when put

> on a high dosage. I searched under " hypervitaminosis E " and while

> it's rare - it's a great concern to me. While some may not respect

> the dosages set by some organizations -the dosage of vitamin E in

> just 2 capsules of Speak is over the tolerable daily upper limit of

> dosing for infants to 8 year old children according to the Food and

> Nutrition Board of the Institute of Medicine and the dosage of

> vitamin E in 4 to 6 capsules of Speak is over to 5 times over the

> tolerable daily upper limit of dosing for infants to 18 year olds

> according to the Food and Nutrition Board of the Institute of

> Medicine

> http://ods.od.nih.gov/factsheets/vitamine.asp#h7

>

>

> Of course there is nothing wring with vitamin E but you should

> consider that for those of us that have used fish oil therapy we

have

> found that we use months or even years of daily-dose regimen. Again

> from what I have read too much vitamin E can lead to

hypervitaminosis

> E which is toxic to our body with prolonged use and I read things

> about myopathies, myalgia, necrosis -I'm sure they are all rare but

> I'm sure giving children/preschool children high levels of vitamin E

> isn't the norm either. Both vitamin E and vitamin K are forms of

> vitamins we call fat-soluble vitamins (the rest are Vitamin A and

D).

> I've read that fat soluble vitamins are metabolized and hydrolyzed

> and stored in the liver. I was told that the dosage of vitamin E in

> Speak is not based upon the findings in this group but I was told

> it's based upon science. For my own research on my own son it's a

> thumb's down. Perhaps it will work for some of you but I'd run it

> past your child's doctor.

>

> I did not read anything about seizures being linked to high dosages

> of vitamin E -just the other things. But for sure I'm not a vitamin

> E expert. I'm just a Tanner expert.

>

> =====

>

[Guest guest]

,

So you know, I already posted on the speech trial forum and Gretchen

response to my experience was the following. So you can see why it

cotninued to be questionable as to what they are doing. She is telling

me that when my daughter had her experience, it was the height of the

cold and flu season. Since when did September becme the height of the

flu/cold season. Those of us parents whose children had negative

reactions feel that we are not being validated for those experiences.

Gretchen tries to pinpoint these reactions on other things, the flu,

a cold, something my daughter ate, etc etc. There has been no effort

to figure out WHY those who had negative experiences had them in the

first place. I find it troubling that a product could cause this and

there is no outreach to figure out whats causing it as well as what

can be done to treat it. So, I've already posted on the forum and she

continues to say the things she says such as below.

" Hi Lori, thank you for your post.

To all readers, we contacted 'other parents' referred to here, and

after speaking with them, were reassured.

The facts are, nearly all families using this product are having great

results, it is the height of cold and flu season and both we and

parents understand it is difficult to separate symptoms (easier

after-the-fact), and that some of the indirect reports were false (it

was refreshing to contact people and hear such great news).

This is what happened: nobody contacted the company but we proactively

contacted individuals, based an on outside source of information and

in result, were more assured with the product. It turned out to be a

beneficial exercise for us; we learned more and were more reassured.

We cannot and will not share information reported to the company. We

are getting some remarkable feedback from families. I wish we could

share them, but will follow professional protocol. Families are free

to post here. We created this site in response to families wanting a

place to share results. This is not a moderated site.

Scientific Affairs

NourishLife, LLC "

> > Mon Sep 29, 2008 9:42 pm

> > >

> > Re: Speak supplement ?

> >

> > Hi ,

> >

> > We didn't have any seizures or signs of seizures like the other 3

> > families that just posted but Tanner is 12 years old and 5 foot 6

> > inches tall.

> >

> > Tanner started on Speak at 6 capsules plus I gave him 4 capsules of

> > the high gamma tocopheroal because I was so afraid of regression as

> > he did any time I attempted to raise the level of alpha E -so with

> > the 1.500 IUs of alpha tocopheroal and the 600 mg of gamma

> > tocopheroal plus the 800 extra of each he was on what I was not

> aware

> > a crazy too high dosage of vitamin E. For 5 days he was on that with

> > no regression -but no surge either. On the 6th day he woke up at 4

> > AM and was vomiting pretty much all morning with loose stools too. I

> > thought he had a bug and kept him home from school and didn't give

> > him any Speak or anything else. As the day went on he seemed better

> > and even started eating again and seemed fine. I gave him only 3

> > Speak that day.

> >

> > The next morning I only again gave him 3 Speak and nothing else. He

> > went to school and seemed fine in the AM but the school called after

> > lunch -it was a hot day and Tanner was outside playing basketball

> and

> > he felt like he was " going to puke " so I went to school and picked

> > him up thinking once again it just had to do with the fact he had

> > been sick the day before. And perhaps that is all it was. On the

> > way home from his school I spoke to and she said only give

> > him the Speak and not the extra vitamin E anymore. Tanner's

> > regression started once I just put him onto the pure Speak. His

> > speech got what I call " bumpy " pretty rapidly which is our first

> sign

> > of regression for him and I realized the dosage or formula of

> vitamin

> > E was all wrong for him.

> >

> > For the next week or so I put him on 4 Speak with 2 high gamma from

> > Vitamin World which slowed the regression down -but each day it was

> a

> > bit worse. I know -why did we continue? Tanner wanted to try it as

> > he was excited too about trying Speak. We were giving it time and I

> > thought we could figure it out. I went out and bought an almost pure

> > gamma but that seemed to make things even worse. Count another 3 or

> > 4 days into trying different ratios of gamma with the formula. I

> > even brought it down to 2 Speak, 2 ProEFA, 1 ProEPA, 2 of the almost

> > pure gamma E...and one day with the high gamma...so much for making

> > things easier!

> >

> > On the day we decided to stop (Tanner asked to stop) Tanner was

> > standing out in our driveway wanting to tell me something before he

> > left for school. He opened his mouth and started groping but nothing

> > was coming out. Even just writing this now it horrifies me that I

> > let it go on that long. He seemed apraxic again for the first time

> > in years. Later that day I had a school meeting and the teacher told

> > me that Tanner who is usually " talkative " in school with everyone

> > didn't say a word almost all day. He became very quiet as he is very

> > aware of his speech. The next day we went back to 4 ProEFA and 2

> > ProEPA no vitamin E at all. but it took days till he was anywhere

> > near where he was before and he's not 100 percent back in speech yet

> > but I am not sure how long the vitamin E stays in the body.

> >

> > On one of the next days we went on a class trip and I drove to the

> > Indian River (where I had to drag a net through God knows what and

> > found out later there are " spotted eels "

> > http://www.softscuba.com/pix/Altriethspottedeel.jpg in the Indian

> > River lagoon!!!) with Tanner and other boys and girls in his class

> > and while everyone was talking....I mean we found jelly fish and

> > shrimp and baby flounder and a blow fish and a pipe fish -stuff that

> > made me cringe for sure...Tanner was for the most part quiet. Not

> > saying much of anything. He laughed -just didn't talk. On the way

> > home 2 of the boys in my car asked Tanner why he was so quiet and he

> > just shrugged.

> >

> > Clearly Speak is not the formula for Tanner. Based on what I read

> > about vitamin E (which I have to say I didn't explore until after

> > Tanner's regression unfortunately) I'm not comfortable keeping my

> son

> > on any type of mega dosage of vitamin E for extended periods of time

> > anyway. He tested normal in vitamin E and clearly regressed when put

> > on a high dosage. I searched under " hypervitaminosis E " and while

> > it's rare - it's a great concern to me. While some may not respect

> > the dosages set by some organizations -the dosage of vitamin E in

> > just 2 capsules of Speak is over the tolerable daily upper limit of

> > dosing for infants to 8 year old children according to the Food and

> > Nutrition Board of the Institute of Medicine and the dosage of

> > vitamin E in 4 to 6 capsules of Speak is over to 5 times over the

> > tolerable daily upper limit of dosing for infants to 18 year olds

> > according to the Food and Nutrition Board of the Institute of

> > Medicine

> > http://ods.od.nih.gov/factsheets/vitamine.asp#h7

> >

> >

> > Of course there is nothing wring with vitamin E but you should

> > consider that for those of us that have used fish oil therapy we

> have

> > found that we use months or even years of daily-dose regimen. Again

> > from what I have read too much vitamin E can lead to

> hypervitaminosis

> > E which is toxic to our body with prolonged use and I read things

> > about myopathies, myalgia, necrosis -I'm sure they are all rare but

> > I'm sure giving children/preschool children high levels of vitamin E

> > isn't the norm either. Both vitamin E and vitamin K are forms of

> > vitamins we call fat-soluble vitamins (the rest are Vitamin A and

> D).

> > I've read that fat soluble vitamins are metabolized and hydrolyzed

> > and stored in the liver. I was told that the dosage of vitamin E in

> > Speak is not based upon the findings in this group but I was told

> > it's based upon science. For my own research on my own son it's a

> > thumb's down. Perhaps it will work for some of you but I'd run it

> > past your child's doctor.

> >

> > I did not read anything about seizures being linked to high dosages

> > of vitamin E -just the other things. But for sure I'm not a vitamin

> > E expert. I'm just a Tanner expert.

> >

> > =====

> >

[Guest guest]

Maybe I'm wrong here, but it seems that people are having trouble with

negative comments being posted to PharmaOmega's message board. Everyone

seems to be emailing their comments directly to the company and their

message board as well as posting them here.

Kate

>

> Lori,

>

> I have to agree with something Gretchen said a while back - this is

> the supposedly only place where negative reports are being given.

> While it's great to keep a thread in a neutral (non-company)

> environment, it is more important to post any comments, positive or

> negative, on THEIR site, in THEIR forum. Anything Gretchen reports

> back can be considered hearsay, so members need to get on and say it

> themselves... Sending private emails can't be proven, making unheard

> calls can't be proven. Take her advice, and post your comments on the

> speechtrial.com/forum board.

>