DownSyn Forum

marie · Posted: April 10 2006, 4:31 PM Post subject:

I heard about this new vitamin therapy for children with Ds and I was wondering if any of you have heard about this or are using this with your children. These vitamin supplements are called nutrivene-D. Have you seen improved health? Is there alot of research studies to support this?

_________________

[IMG]
http://i46.photobucket.com/albums/f111/marieharder/DSC00699.jpg[/IMG]

Kokie · Posted: April 10 2006, 4:37 PM Post subject:

YES!!! We give it to my brother. There is a huge benefit to them!! And, research behind them to back it up. I will PM you a compilation of info I have. If you don't know how to get the PM or don't get it you can email me at qf@gotdownsyndrome.net or anyone can give me their email addy and I can email them the info!

Qadoshyah

_________________
sister to 10 siblings including boy(DS)/girl
twins - February 2005 Smile

www.gotdownsyndrome.net

Tom · Posted: April 10 2006, 4:37 PM Post subject:

It's not new. It's been around since before Mikey was born. There is still no scientific evidence to support its use in children with Ds. They have been talking about getting money together to do a study for at least 10 years.

_________________
Tom

Dad to Beth (17) and Mikey (13 - Ds and PDD-NOS)
My Blog - Random Thinking
Find me on Facebook
Find me on Twitter as tgpaul

Tom · Posted: April 10 2006, 4:39 PM Post subject:

Kokie wrote:

And, research behind them to back it up.

There is no scientific research to back up the use of Nutrivene in children with Ds. But, worst case scenario is that it is a harmless waste of money.

_________________
Tom

Dad to Beth (17) and Mikey (13 - Ds and PDD-NOS)
My Blog - Random Thinking
Find me on Facebook
Find me on Twitter as tgpaul

Carson's Mom · Posted: April 10 2006, 4:46 PM Post subject:

We use it for my son Carson. If you want any information on it, please PM me and I would be happy to share why we use it.

Kayla

_________________
,
,

Callan 7, Kenna 5, Carson 2
http://www.firstgiving.com/carsonglascock

Kokie · Posted: April 10 2006, 4:51 PM Post subject:

Tom wrote:

Kokie wrote:

And, research behind them to back it up.

There is no scientific research to back up the use of Nutrivene in children with Ds. But, worst case scenario is that it is a harmless waste of money.

Tom, I'm sorry, but that is not true. There may not be double blind, placebo studies, but I can give a ALOT of links that show all these different things that ARE going on inside their bodies. They have an extra chromosome, so doesn't it make complete sense that they have chemical/metabolic differences going on in their bodies?? I'll gladly post the links that I am talking about right here, if anyone is interested.

I've PM'd them to you, marie already.

Qadoshyah
http://www.gotdownsyndrom.net

_________________
sister to 10 siblings including boy(DS)/girl
twins - February 2005 Smile

www.gotdownsyndrome.net

elizasmom · Posted: April 10 2006, 5:13 PM Post subject:

The vitamin therapy concept has been around in various forms for a long time for Ds (I saw something about a Dr. using it in the 50's). That being said, we use Nutivene-D and DHA supplements. It's a choice you have to personally make with your doctor. Ask lots of questions too.

_________________
Liz - Mom to Walker (3/24/02), Eliza (Ds) (5/6/05), Alden Jane and Noah Henry (5/2/08 )

lilpayton · Posted: April 10 2006, 6:06 PM Post subject:

We just started using them, but yes, it is a very controversial thing. You can find more info about them under the TNI board on here. Or check out:

http://www.nutrivene.com
http://www.lleichtman.org

_________________
Bethany, Mommy to Mason (6), Payton (4, DS) and Addison (3, DS)

Family blog:
http://thebalsisfamily.blogspot.com/

Adoption blog:
http://dreamingonanangel.blogspot.com/

Take control of your health with Juice Plus
www.livelife-juiceplus.com

Tom · Posted: April 10 2006, 6:43 PM Post subject:

Quote:

Originally posted by Kokie
Tom, I'm sorry, but that is not true. There may not be double blind, placebo studies, but I can give a ALOT of links that show all these different things that ARE going on inside their bodies.

Which are very nice but scientifically worthless. ONLY a double blind placebo study has any value in determining if a medication works. Anecdotal evidence and opinions are interesting but they don't prove anything. As I have said, they have talked about doing a double blind study on Nutrivene for 10 years but for some reason it never happens. You may care to read the QuackWatch web site.

http://www.quackwatch.org/01QuackeryRelatedTopics/down.html

_________________
Tom

Dad to Beth (17) and Mikey (13 - Ds and PDD-NOS)
My Blog - Random Thinking
Find me on Facebook
Find me on Twitter as tgpaul

Kokie · Posted: April 11 2006, 1:13 PM Post subject:

Tom wrote:

Quote:

Originally posted by Kokie
Tom, I'm sorry, but that is not true. There may not be double blind, placebo studies, but I can give a ALOT of links that show all these different things that ARE going on inside their bodies.

Which are very nice but scientifically worthless. ONLY a double blind placebo study has any value in determining if a medication works. Anecdotal evidence and opinions are interesting but they don't prove anything. As I have said, they have talked about doing a double blind study on Nutrivene for 10 years but for some reason it never happens. You may care to read the QuackWatch web site.

http://www.quackwatch.org/01QuackeryRelatedTopics/down.html

Tom, I am not talking about anecdotal evidence at all! I am talking about scientific RESEARCH that has been done. Anecdotal evidence is just that - evidence, but I said researh. Like I said, I can post a whole lot of links that show this research that I am talking about.

I don't really care what quackwatch says . . . as I think his article doesn't have much substance.

Qadoshyah

_________________
sister to 10 siblings including boy(DS)/girl
twins - February 2005 Smile

www.gotdownsyndrome.net