SPEAK

October 4, 2003

In a message dated 10/4/2003 4:23:20 PM Pacific Daylight Time,

Jrmatheson@... writes:

> I know some people will disagree with me....

>

> Jarom

Jarom.......what you use to hear best with is not up for debate. If you

hear best with SPEAK.....only you can discover that. Other people cannot tell

you that ACE or anything else is better than what you have discovered works

best. That particular part of CI hearing......what strategy works best is

totally

dependent on your own personal etiology. You might try something different

in six months to a year and see if your needs have changed.

Before starting on HiRes I was using CIS and MPS.....two of the Clarion

strategies. I did not like the third strategy called SAS. I had a hard time

choosing which one I liked best because they both had some pretty awesome

" charms "

lol. I knew I needed to settle down with one so that my brain would have

the chance to start hearing and learning again after over 30 years of dead

silence. I chose CIS. Six months later I switched to HiRes.......for me it was

like a dream come true. I have had many changes to my HiRes programs to tweak

it into a personal best. I don't know how close to CI Nirvana I am now

lol.......but nothing will stop me from experimenting and doing what I need to

do.

Keep up the good work and it sounds like you are on the right track!

Deb H

CII surgery 6/18/02-hook up 7/18/02

HiRes,1/2003, Auria, 2/2003

Post lingual/Previous failed implant in 1985

BEA volunteer

October 4, 2003

Thanks Jarom

Even thought I can not hear what hears, it sounds to me

like what you are describing maybe. I know he can understand me

when he only has the 3G on but he really doesnt like what he hears

and still prefers the N22. Reading your post I am more determined

that he at least try SPEAK on his 3G. Our next appointment for

mapping is in about 6 weeks. Is it OK if I copy your post to show

his audi? I will remove your name from it.

Kathy

> You asked me good questions! :-) With ACE I can hear everything

but it

> emphasize the environment sounds more but it also emphasize the

speech

> too. BUT I can't hear the speech from the people that stand away

from

> unless I turn up the sensetivity of microphone. If I turn it up

then I

> will hear more unnecessary sounds. If I turn on Auto-sensetivity

then I

> will not hear the speech too. But with SPEAK I can hear the speech

more

> than environment sounds. It sounds so natural! The sounds with ACE

sounds

> so sharper and little choppy because it use CIS. I prefer SPEAK

than ACE.

> Right now, I can hear my mom talking on the phone a room away

which I

> couldn't do with ACE. I am on number 4 on the knob which is

sensetivity

> of microphone. I have alway use 4 with both ACE and SPEAK and I am

able

> to hear my mom's conversation with her gossip buddies with SPEAK

not ACE.

>

February 6, 2010

Please let me know if anyone has had side effects from the SPEAK.

Several children who are on it seem to be increasingly hyperactive. I have also

seen some behaviors such as " blank stares " .

I would appreciate if anyone can give me feedback on their experience or

knowledge of SPEAK.

Thanks

February 6, 2010

Do NOT use it!! Many kids on this list had horrible side effects---loss of

speech, seizures, etc. Including 's son, Tanner. I'm sure she will reply to

your message as well.

SPEAK has too much vit E & K--NOT a good thing. Please read this

http://www.facebook.com/topic.php?uid=115029735601 & topic=10637

Warmest wishes,

Barbara A , M.S., CCC-SLP

Executive Director, Help Me Speak, LLC

410-442-9791

[ ] SPEAK

Please let me know if anyone has had side effects from the SPEAK.

Several children who are on it seem to be increasingly hyperactive. I have also

seen some behaviors such as " blank stares " .

I would appreciate if anyone can give me feedback on their experience or

knowledge of SPEAK.

Thanks

February 6, 2010

My son (29 months, 32 lbs) was on Speak for 3-4 months last year with no ill

effects other than slightly looser stools. We also didn't notice any " surges, "

so we decided to take a break from it.

I just started him back on 2/day 3 Sundays ago and we almost immediately noticed

HUGE advances in his motor planning capabilities. His OT said at this rate, we

won't need her much longer, and the speech therapist asked what we were doing

differently. He started singing, something he had never attempted before. His

words are far clearer and he is putting 2 words together now. He has also been

asking to use the potty. He has been more energetic, but it really hasn't

bothered me. He is still sleeping and napping fine and his eye contact and

attention to task are fantastic. His stools have not been affected thus far this

time around.

Sent from my iPhone

On Feb 6, 2010, at 6:14 AM, " " <melanieskahn@...> wrote:

Please let me know if anyone has had side effects from the SPEAK.

Several children who are on it seem to be increasingly hyperactive. I have also

seen some behaviors such as " blank stares " .

I would appreciate if anyone can give me feedback on their experience or

knowledge of SPEAK.

Thanks

February 6, 2010

I tried SPEAK for my 3 year old and his speech regressed. I asked his his

doctor what he thought of the formula and he told me that it was just plain

unsafe. WAAAAAAY to much E + K. We went back to Proefa and eventually

recovered some of his speech.

>

> Please let me know if anyone has had side effects from the SPEAK.

> Several children who are on it seem to be increasingly hyperactive. I have

also seen some behaviors such as " blank stares " .

> I would appreciate if anyone can give me feedback on their experience or

knowledge of SPEAK.

> Thanks

>

May 5, 2010

Has anyone ever used SPEAK? What have been your experiences good & bad with it?

Thanks,

Hildy

May 5, 2010

Hildy don't you have a child that is prone to seizures?!!!!!!! Did you ever

speak to Mel's mom Robin as your daughter like hers is on Depakote? Is your

child on nutriiveda? If so would you like to be put in touch with Dr. Tom?

(you can find him on this page) http://pursuitofresearch.org/advisors.html You

can read Dr. Tom's theories as to why nutriiveda is " working " here

http://pursuitofresearch.org/science.html and if anyone wants to be in touch

with him for the neurotransmitter testing email me at lisa@...

For you and Ruby -here again is information about why I do not recommend speak

unless in my opinion your child has been diagnosed with some sort of

hypovitaminosis e which is quite rare or something like that and in my opinion

used only under the strict guidance and monitoring of a medical doctor who is

aware of the reports of seizures and regressions within a day or two on this

product that has levels of both vitamin E and K that are far above upper

tolerable levels.

Speak comes up WAY too much for me and I'm shocked it's still out there. Sadly

I've had emails from other parents since who's children developed seizures on it

and the parents assume it is due to the fish oils!!!!! Is the mega vitamin e

and k being downplayed now???...and as far as that one doctor recommending it -I

have my feelings about that below, We had about 30 or 50 families try the first

batch of speak as you can read all in the archives. You will see links to some

of the actual positive negative and neutral results below. My sis in law who

does research for J & J said that if this was an actual trial it would ave been

stopped immediately for safety and ethical reasons. As far as I can recall and

please feel free to check the archives -none of us that I know of were told

there were any side effects of massive massive massive in some case 3 times

above upper tolerable levels of vitmain E. I mean just reading that makes me

feel dumb...yet people are still asking about it -and doctors are recommending

to try it????!!!! Zero respect from me now especially after what we know!!!

Please do check the archives because I recall about vitamin e -being told it's

benign.

Typically I dig and check everything out but considered this one pediatrician

behind this formula who is also a parent a friend and many of us trusted her.

Even on day 5 when my son was vomiting and had diarrhea that was so bad and I

was on the phone with her- she never once said to me " even though it may be

nothing that could be a sign of hypervitaminosis so let's just watch out for

that " - and I even asked her " well you don't think this has anything to do with

speak do you? " and she said " oh no! it's probably something he ate " grrrrrrrr.

And it was after that my son regressed which lasted for 7 horrific months of not

knowing if he would ever come back. In fact I wonder if it's due to speak that

Tanner appeared to develop metabolic problems with weight which was in hindsight

the one good thing that came out of it -because it led me to nutriiveda which

has been a blessing more than I can ever tell you and not just for Tanner.

This is one reason I tell everyone to check everything out...nutriiveda too.

The nutrients in nutriiveda are from whole foods which is the purest most easily

digestible form of nutrients, formulated by world renowned medical doctors...and

most important the nutrients we are using are all within NIH guidelines... The

worst side effect of nutriiveda is the rare case when there are no dramatic

across the board OMG surges reported?! I have to stay in my happy place

thinking of nutriiveda- here's info about speak that I hope and pray I don't

have to look at again or any time soon!

~~~~~~~start of archive:

As you can see from the archives complied here by Lori- the

overwhelming majority of us had HORRIBLE results -my son regressed dramatically

and not just in speech -but in his school work. It took OVER SEVEN MONTHS and

talks to his school, friends to share why the child who was doing so well all of

a sudden couldn't say the letter " B " And to me that's not as bad as the one

child from this group Evoni who never had seizures prior to speak who last I

heard is since being on it (seizures started in a few days in a number of the

children as reported here) started having multiple seizures daily and has

regressed to where she could no longer walk, or HOLD UTENSILS.

I am TOTALLY DISGUSTED that this product continues to be marketed in the way it

is. It should be in my opinion used in those unique rare situations overseen by

a medical expert in using potentially toxic levels of fat soluble vitamins on

preschool and school aged children.

I know there are medications out there that save lives but could kill someone

that doesn't need them -and to me speak perhaps fits into that category- and I

pray that nobody dies from this but fear it can kill a child based on what I saw

happen to my own son and to others here. To me however selling this product,

recommending this product as a " try it " type supplement is irresponsible and

dangerous. I have ZERO respect for any professional who continues to stand

behind this product marketed to " late talekrs " or the garden variety " apraxic "

knowing what we know today.

Below is a link to read positive, neutral and negative results from speak, an

article from an expert on it -and below that info about EFAs which we have used

in this group with tremendous and " miraculous " results and with no side effects

(outside of things like temporary mild loose stools) If you want to try adding

a bit of vitamin e I'd first read up on " hypervitaminosis e " and I'd also start

with an alpha gamma 1/1 ratio in no more than a 200/200 dosage which many of us

did use with success for around a year prior to the release of this product

which took the best of what we know in this group -and then with the vitamin e-

took theory from God knows who or where. But my child and none of our children

are guinea pigs to prove or disprove someone's theory. Again in my opinion if

what we saw here was a clinical trial -it would have been ended immediately and

that (to me) dangerous product would not be on the market.

Results from this group

/links/Pharma_Omega_Spea\

\

k_reports_from_group_001224703760/

From apraxia.org our Facebook page

http://www.facebook.com/group.php?gid=115029735601#/topic.php?uid=115029735601 & t\

\

opic=7363

see this excellent response from a speech therapist to a person who asked about

this product.

http://en.allexperts.com/q/Speech-Disorders-987/2008/11/New-patented-product-ava\

\

ilable.htm

Expert: Rossetter, M.S., CCC-SLP - 11/19/2008

Question

Hi, I have been doing some research and have come across a new product that is

now available for speech disorders. The company is offering a box complimentary

to anyone that has a child that could benefit from it. The product is called

speak and it is offered at www.speechnutrients.com. What is your opinion on this

product? THank you, Judy

Answer

Thank you for the question, Judy. (Sorry for the delay in answering your

question. I have been ill for the past few days.)

I'm so glad you asked about this product before giving it to your child.

I will begin by saying that I am obviously not a physician, and I do not have

first-hand experience with this product, but I do have a general knowledge of

nutrition, as well as research design.

Having read through the SpeechNutrientsï¿½ website, I have found some reasons I

would not personally use or recommend this product.

1.) While it is true that research has shown a benefit for taking Omega-3 fatty

acids, this company has mixed Omega-3 fatty acids with Vitamins E and K in VERY

large quantities. The ingredients (fish oil, vitamin K, vitamin E, etc.) in

speakï¿½ are all generally known to be of benefit to humans, but there are no

studies to show that exceeding recommended daily values in such large quantities

is even safeï¿½much less beneficial. Not to mention, there are no studies to

show

that these ingredients in such large quantities don't have adverse interactions

with each other.

According to the product's chart, the recommended dose of 4 capsules per day (2

capsules twice per day) has children under 4 taking 10,000% of the recommended

daily allowance of vitamin E (according to their information, no allowance has

been set for children under 4). People aged 4 and over would be taking 3,330 %

of vitamin E and 5,750 % of vitamin K. Since they are vitamins, the doses are

not as regulated as medication, so 40 pound 4-year-olds are lumped in the same

category as 250 pound, 40-year-old men.

Daily allowances are set for a reasonï¿½ It's never a good idea to take too much

of any vitamin. The research I have in front of me (1) says, " vitamin E has been

thought to raise blood pressureï¿½ large doses of vitamin E may have a mild

immune-suppressing effect. " " High intakes of vitamin E oil can cause nausea,

diarrhea, or flatulence in some people. " " Vitamin K is necessary for normal

blood clotting. " This product's web page states: " Physically, some children (and

some adults) may experience loose stoolsï¿½ " ï¿½but they don't say why.

Obviously,

it is because this is a very large dose of vitamin E.

Nausea, diarrhea, etc. are the least of the side effects associated with this

product. It is very concerning that this is the list of side effects listed on

the website: " elevated heart beat, fever, possible seizures, headaches,

emotional outbursts and regressions in speech and behaviors. " The makers of this

product report they, " do not know if any of these incidents are or are not a

result of taking speakï¿½. " This is because, as far as I can tell, the research

has not been conducted.

2.) The makers of speakï¿½ report, " Our initial intention was to create this

formula for use in upcoming clinical trial research. However, during the process

of collaboration, formulation, and observation and understanding the importance

of timing, it became clear that the most responsible action we could take was to

make this formula available to the public. "

They intended to do research? They thought it was responsible to make this

product available before they conducted the necessary research? In the

scientific community, this is not the way to go about responsibly distributing a

product--- especially a product meant for children. Optimally, research is done

to ensure safety and effectiveness, then the product is released for the public.

It is important to mention: anyone can get a patent for anything that is

novelï¿½this does not mean that studies have been conducted in any way.

And since this product is only considered a " supplement, " the FDA does not play

a part in regulating the safety or efficacy. The FDA website (2) says, " By law

(DSHEA), the manufacturer is responsible for ensuring that its dietary

supplement products are safe before they are marketed. Unlike drug products that

must be proven safe and effective for their intended use before marketing, there

are no provisions in the law for FDA to " approve " dietary supplements for safety

or effectiveness before they reach the consumer. "

Normally, products claiming this type of success should have scientific-based

evidence for findings. The makers of speakï¿½ report that they are in the

process

of conducting a " Virtual Focus Group " where parents keep a diary and report

every couple of weeks. This is not the optimum way of going about conducting

research.

In order for the company to make the claims they do, they would need a speech

and language professional, with an unbiased opinion, to test the child's speech

and language before, during, and after taking the productï¿½ otherwise, how can

they claim it increases and improves these things? Additionally, a study of this

nature ï¿½one where children ingest untested productsï¿½should involve regular

check-ups from a physician to closely monitor adverse physical side effects.

As far as I can tell from the information they provided on their website, the

makers of speakï¿½ have provided no data in these regards for this particular

formula.

This opinion is based on the information given on the SpeechNutrientsï¿½

website,

documented nutrition research, and my knowledge of research design. As I

mentioned earlier, I do not have first-hand experience with this product. As

always, you should speak with your child's physician before beginning, ending,

or dismissing a supplementation regiment. If you have concerns about your

child's speech and language development, I recommend you seek an evaluation by a

Speech-Language Pathologist.

I hope this was of some help to you.

(1) Haas EM (1992) Staying Healthy with Nutrition: The Complete Guide to Diet

and Nutritional Medication. Celestial Arts, Berkley, California.

(2) U. S. Food and Drug Administration, Center for Food Safety and Applied

Nutrition, Overview of Dietary Supplements.

http://www.cfsan.fda.gov/~dms/ds-oview.html#safe

=====

May 5, 2010

There is plenty of info about SPEAK in the archives. A lot of people who

switched from Nordic Naturals to SPEAK noticed regression and seizures. I had

never used anything before I was selected for the SPEAK trial, and my son had an

amazing surge - within 2-3 days he said his first 6 word sentence ( " I want this,

grandma, for Christmas " while holding a train). If I didn't tape it, the

therapist wouldn't have believed it.

I could be wrong, but I think that if you hadn't used anything before you will

see improvements, but if you use Nordic, stick with that instead. There were

improvements shown in new users, but they were outweighed by regressions by

people who were previously on Nordic. My neuro didn't like the high vitamin E,

so I switched to Nordic.

>

> Has anyone ever used SPEAK? What have been your experiences good & bad with

it?

>

> Thanks,

> Hildy

>

May 5, 2010

thank you.

May 5, 2010

I currently am using Speak with my 3 yr old daughter. She's been

taking it since December. Haven't seen much progression nor regression

nor any problems/ side effects. After reading the different responses

about speak am reluctant to keep giving it to my daughter. Would like

to try Nordic naturals. Which should I purchase and how much should I

give her if she weighs 35 pounds? Was looking in their site. Saw the

liquid proEFA. Is that ok to use. I hate puncturing the capsules and

smelling like fish all day. Does she need EPA too? How much? Just

looking for some advice.

Sent from my iPhone

>

> Hildy don't you have a child that is prone to seizures?!!!!!!! Did you ever

speak to Mel's mom Robin as your daughter like hers is on Depakote? Is your

child on nutriiveda? If so would you like to be put in touch with Dr. Tom?

(you can find him on this page) http://pursuitofresearch.org/advisors.html You

can read Dr. Tom's theories as to why nutriiveda is " working " here

http://pursuitofresearch.org/science.html and if anyone wants to be in touch

with him for the neurotransmitter testing email me at lisa@...

>

> For you and Ruby -here again is information about why I do not recommend speak

unless in my opinion your child has been diagnosed with some sort of

hypovitaminosis e which is quite rare or something like that and in my opinion

used only under the strict guidance and monitoring of a medical doctor who is

aware of the reports of seizures and regressions within a day or two on this

product that has levels of both vitamin E and K that are far above upper

tolerable levels.

>

> Speak comes up WAY too much for me and I'm shocked it's still out there.

Sadly I've had emails from other parents since who's children developed seizures

on it and the parents assume it is due to the fish oils!!!!! Is the mega

vitamin e and k being downplayed now???...and as far as that one doctor

recommending it -I have my feelings about that below, We had about 30 or 50

families try the first batch of speak as you can read all in the archives. You

will see links to some of the actual positive negative and neutral results

below. My sis in law who does research for J & J said that if this was an actual

trial it would ave been stopped immediately for safety and ethical reasons. As

far as I can recall and please feel free to check the archives -none of us that

I know of were told there were any side effects of massive massive massive in

some case 3 times above upper tolerable levels of vitmain E. I mean just

reading that makes me feel dumb...yet people are still asking about it -and

doctors are recommending to try it????!!!! Zero respect from me now especially

after what we know!!! Please do check the archives because I recall about

vitamin e -being told it's benign.

>

> Typically I dig and check everything out but considered this one pediatrician