New here - 6 year old with severe speech delay

[Guest guest]

Hi, I'm Liz. I have two boys ages 11 and 6. The older son lost speech

development after his 18 month vaccinations and regained full speech after early

intervention. The younger had a speech delay early on (only had 5 words at two

years old), and only had about 30 words at 3 years, which words seem to have

been changed and forgotten over time leaving him limited language and

articulation problems at 6 years old, currently (people other than family cannot

understand him/sometimes family can't either).

I have taken a couple ABA courses and am setting up a verbal behavior program

for him in my home this summer. I can't help but feel sad about my older son

recovering and my younger one not recovering yet. I wanted to know if anyone

has encouraging stories or recovery hope and prayers to give us. We've had so

many gains in areas other than speech, but it is really on my heart to do all I

can to help him in this area.

[Guest guest]

Dear Liz,

You have to try speak from NourishLife. I have seen hundreds of documented

cases of this supplement helping children in the same situation. It's

all-natural Omega-3s and Vitamins in a very specific combination. It helps with

speech development, motor skills and focus. Visit the website, www.

apraxiaresearch.com and see if it is right for your son.

>

> Hi, I'm Liz. I have two boys ages 11 and 6. The older son lost speech

development after his 18 month vaccinations and regained full speech after early

intervention. The younger had a speech delay early on (only had 5 words at two

years old), and only had about 30 words at 3 years, which words seem to have

been changed and forgotten over time leaving him limited language and

articulation problems at 6 years old, currently (people other than family cannot

understand him/sometimes family can't either).

>

> I have taken a couple ABA courses and am setting up a verbal behavior program

for him in my home this summer. I can't help but feel sad about my older son

recovering and my younger one not recovering yet. I wanted to know if anyone

has encouraging stories or recovery hope and prayers to give us. We've had so

many gains in areas other than speech, but it is really on my heart to do all I

can to help him in this area.

>

[Guest guest]

Wow the nerve! Liz and all...since this company is posting here about their

product that appears to have in days made my son and many others here regress

-have seizures etc.... Thought I'd post an article on this from the web: (also

much on this in the links and archives)

" 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 SpeechNutrients™ 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

speak™ 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 safe—much 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 reason… 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 pressure… 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 stools… " –but 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 speak™. " This is because, as far as I can tell, the research

has not been conducted.

2.) The makers of speak™ 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

novel—this 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 speak™ 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 product… otherwise, how can

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

nature –one where children ingest untested products—should 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 speak™ have provided no data in these regards for this particular

formula.

This opinion is based on the information given on the SpeechNutrients™ 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

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

ilable.htm

=====

[Guest guest]

Thank you for telling me that.

I would like to share something else with you. I have been to a couple Autism

Speaks " information meetings " or " trainings " in my area and I have not been

impressed by the info. from them. I was telling my son's teacher that I went to

an RDI training expecting to get some useful advice on how to implement the

techniques and was disappointed. I drove an hour to hear this lady just talk

about success stories and hand out her business cards! My son's teacher shook

her head, she said, yeah, they want you to buy their services - they want to

draw you in and there are different levels you have to pay for to get more and

more info. It was probably hard-earned fundraiser money used to put on this

so-called training (more like marketing presentation).

Trainings, studies, they are all after our money. This stuff just makes me

sick. I'm going back into my hole - rather, my sunny garden...

>

> Wow the nerve! Liz and all...since this company is posting here about their

product that appears to have in days made my son and many others here regress

-have seizures etc.... Thought I'd post an article on this from the web: (also

much on this in the links and archives)

>

> " 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 SpeechNutrients™ 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

speak™ 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 safe—much 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 reason… 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 pressure… 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 stools… " –but 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 speak™. " This is because, as far as I can tell, the research

has not been conducted.

>

> 2.) The makers of speak™ 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

novel—this 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 speak™ 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 product… otherwise, how can

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

nature –one where children ingest untested products—should 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 speak™ have provided no data in these regards for this particular

formula.

>

> This opinion is based on the information given on the SpeechNutrients™

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

>

>

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

ilable.htm

>

> =====

>

[Guest guest]

,

Is there a way to keep companies from marketing their products on this message

board?

Thanks,