News alert on Nutrivene-website: new DS/supplement study

November 21, 2008

Study Shows Benefits of Nutritional Supplementation in Down Syndrome

A new study of children with Down syndrome shows significant

improvement in cognitive skills and behavior after nutritional

supplementation with antioxidants, vitamins, and minerals.

Forty children with Down syndrome, along with an equal number of age-

and sex- matched controls, were supplemented for 6 months with a

specially formulated nutritional supplement. According to clinical and

psychological assessments, neuronal stress in DS children was

addressed encouragingly by the nutritional supplementation. The study

suggests the significance and importance of early intervention with

nutritional supplementation in DS children to ameliorate the severity

of this condition.

For more information on this study, click here (Singapore Medical

Journal):

http://smj.sma.org.sg/4907/4907a7.pdf

Switzerland

November 22, 2008

Thank you for the additional information, .

Do you know if it was a double blind study or not? I wasn't able to find

any information on the study design...

Buckley schrieb:

> It is an interesting pilot study. However, reading beyond the abstract, it

does not appear to offer a reliable standard of evidence supportive of

supplementation to improve developmental outcomes.

>

> Remarkably, the paper completely fails to describe the cognitive assessment

methods used and does not disclose any actual results that support the statement

that " psychological assessment... revealed significant improvement in cognitive

skills " . In the absence of that information, the authors cannot sustain their

conclusion.

>

> Interestingly, Nutrivene makes no note of the limitations of the study on its

home page and has dropped the word " pilot " when copying and pasting the

abstract.

>

> By contrast, the clearest and most reliable examination of developmental and

health outcomes with/without antioxidant/folate supplementation (to date)

details its methods and fully reports its results. It offers a higher standard

of evidence because it was a randomized controlled trial involving a larger

study population:

>

> http://www.bmj.com/cgi/content/full/336/7644/594

>

> It found no significant differences in developmental outcomes between

treatments and placebo groups and no difference in markers of oxidative stress

that (according to claims for TNI) is the prime target of supplementation.

>

> [DownSyndromeInfoExchange] News alert on Nutrivene-website: new

DS/supplement study

>

> Study Shows Benefits of Nutritional Supplementation in Down Syndrome

>

> A new study of children with Down syndrome shows significant

> improvement in cognitive skills and behavior after nutritional

> supplementation with antioxidants, vitamins, and minerals.

>

> ...

>

> http://smj.sma.org.sg/4907/4907a7.pdf

>

> ______________________________________________________________________

>

> Are You Up for Reading? http://www.up-for-reading.org/

>

> Down Syndrome Education International http://www.downsed.org/

> Down Syndrome Education USA http://www.downsed-usa.org/

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>

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>

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November 24, 2008

No. It did not have a placebo control group.

Re: [DownSyndromeInfoExchange] News alert on Nutrivene-website: new

DS/supplement study

Thank you for the additional information, .

Do you know if it was a double blind study or not? I wasn't able to find

any information on the study design...

______________________________________________________________________

Are You Up for Reading? http://www.up-for-reading.org/

Down Syndrome Education International http://www.downsed.org/

Down Syndrome Education USA http://www.downsed-usa.org/

Down Syndrome Online http://www.down-syndrome.org/

This email has been scanned for viruses.

November 24, 2008

Yes, it did have a placebo control group. There were 4 groups. A: Antioxidant

and Folinic Acid; B: Antioxidant only; C: Folinic Acid Only and D: Placebo.

Regarding the study, I have some concerns regarding the type of analysis used or

at least their reporting of the analysis. Can we REALLY say that the Griffith's

Developmental Scale yields measures that are appropriate for use of a factor

analysis? Do the numbers of a developmental quotient actually represent

measures that are equidistant from one another? However, I am still thinking

about it. I also have some concerns about their use of Griffith's Developmental

Scale itself. Some of the test-retest reliability numbers are substandard and

using a criterion based scale to determine cognitive differences is really very

questionable. Also, Griffith's requires no hearing deficits and we all know

that MANY DS children have hearing deficits especially early in their

development.

But more than all this, the study acknowledges use low doses of antioxidants.

While logically supported, these are very different than commercially available

preparations. While I am no chemist, I am not so sure using zinc is appropriate

seeing that it is used to reduce homocysteine levels which goes against logic in

the DS population. However, maybe there is some rationale that I am unfamiliar.

Lastly, I thought the use of antioxidants in DS was not to increase cognitive

development but to reduce vulnerability to oxidative stress and certain kinds of

toxin exposure that occurs as a function of time. So, the true measure would be

cognitive ability following adolescence when many DS see a cognitive decline.

Lastly, I would like to refer you to Biochemical Alterations in Patients with

Down Syndrome (Varga, p., Olah, A., & Olah E.), Orvosi Hetilap, Vol. 149, 26,

1203-1213. I have only read the English Abstract but it was written after the

before discussed article and their conclusions are very interesting. I have not

ordered the article and am not sure it is available in English, but if you have

a link, it would be GREATLY appreciated.

Anyway...

" CONCLUSION: The lower homocysteine, folic acid and B 12 values may be

considered as the consequence of an increased cystathionine-beta-synthase

activity ( " atheroma free model " ). There was no significant alteration in

antioxidant activity level. It can be supposed that the hydrogene peroxide

produced due to increased expression of the superoxide dismutase is metabolized

by the induced glutathione-peroxidase and catalase keeping by this the balance

of the antioxidant system. This hypothesis is supported by the normal

N-acetyl-beta-D-glucasaminidase values not indicating any vascular damage. The

high S100 values, however reflect certain brain damage which shows a progress

with the age. Based on these experiences, regular control of these parameters

is recommended. Furthermore authors think that folic acid supplementation is

indicated in order to improve the patients' learning capacity, inhibit the

development of Alzheimer symptoms and improve the

quality of life. "

Modisette

On a personal note...

To ask me as a parent to wait to help my child when you and I know that my

child's brain is a ticking bomb...well, I consider it to be a very short sided

attitude. I don't care about about his cognitive ability. I believe that all

disabilities are temporal; meaning temporary. When he leaves this earth, all

his physical and cognitive limitations will be resolved. However, I care more

than anything for his little Spirit. While here on this Earth, I don't want my

son's essence to be trapped in a mind that isolates him from the love of his

family. Never, do I want him to feel alone...an experience often felt by those

suffering from the early stages of dementia. I am fighting a battle with time

and to encourage the " wait and see " approach is crap. If you don't know what

the answer is, tell me what you DO know, point me in the right direction and I

will run myself. I have recently ordered books in biochemistry and molecular

biology because one day does

not pass that I don't look at my child and know he is depending on me. If you

want to help me - great. If you want to encourage me - that is even more

wonderful. If you have any other agenda...get out of my way.

Kim

Adulation is poison. - President Gordon B. Hinckley

>

> Subject: RE: [DownSyndromeInfoExchange] News alert on Nutrivene-website: new

DS/supplement study

> To: " DownSyndromeInfoExchange "

> Date: Monday, November 24, 2008, 11:36 AM

> No. It did not have a placebo control group.

>

> Re: [DownSyndromeInfoExchange] News alert on

> Nutrivene-website: new DS/supplement study

>

> Thank you for the additional information, .

> Do you know if it was a double blind study or not? I

> wasn't able to find

> any information on the study design...

>

> ______________________________________________________________________

>

> Are You Up for Reading? http://www.up-for-reading.org/

>

> Down Syndrome Education International

> http://www.downsed.org/

> Down Syndrome Education USA http://www.downsed-usa.org/

> Down Syndrome Online http://www.down-syndrome.org/

>

> This email has been scanned for viruses.

>

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

>

> 1. Anything suggested on this site or opinions offered are

> not intended to be medical or pharmaceutical advice or

> otherwise take the place of your physicians orders, nor to

> diagnose or treat your specific health problems.

> Please discuss all methods of treatment with your

> practitioner.

>

> 2 *****WARNING: Flames and inappropriate treatment of other

> members on this list will NOT be tolerated.

>

> 3. Our HOME page is

> http://groups.yahoo.com/group/DownSyndromeInfoExchange where

> all archived posts as well as photos,links, files, articles

> etc. are found. You " MUST " have a Yahoo ID and

> pass word to enter it.

>

> To contact Carol, owner & moderator

> doihavtasay@...

>

> To contact Kathy, owner & moderator

> kathy_r@...

>

> To contact , owner & moderator

> noliptoday@...

>

November 25, 2008

Yes . I was actually referring to the Singapore-study, not the

British one. I think I'm going to address the researchers directly and

ask them a few things about the study.

>

> Sorry, I thought the question was about the recent study reported in

the Singapore Journal of Medicine (that is what was linked on the

Nutrivene site). You appear to be referring to a study published in

the British Journal of Medicine a little while back.

>

> RE: [DownSyndromeInfoExchange] News alert on

Nutrivene-website: new DS/supplement study

>

> Yes, it did have a placebo control group. There were 4 groups. A:

Antioxidant and Folinic Acid; B: Antioxidant only; C: Folinic Acid

Only and D: Placebo...

>

> ______________________________________________________________________

>

> Are You Up for Reading? http://www.up-for-reading.org/

>

> Down Syndrome Education International http://www.downsed.org/

> Down Syndrome Education USA http://www.downsed-usa.org/

> Down Syndrome Online http://www.down-syndrome.org/

>

> This email has been scanned for viruses.

>

November 25, 2008

I asked a few days ago for information about the psychological assessment

methods and data but have not heard back.

________________________________________

From: DownSyndromeInfoExchange

[DownSyndromeInfoExchange ] On Behalf Of Müller

[mueller-winter@...]

Sent: 25 November 2008 13:35

To: DownSyndromeInfoExchange

Subject: [DownSyndromeInfoExchange] Re: News alert on Nutrivene-website: new

DS/supplement study

Yes . I was actually referring to the Singapore-study, not the

British one. I think I'm going to address the researchers directly and

ask them a few things about the study.

______________________________________________________________________

Are You Up for Reading? http://www.up-for-reading.org/

Down Syndrome Education International http://www.downsed.org/

Down Syndrome Education USA http://www.downsed-usa.org/

Down Syndrome Online http://www.down-syndrome.org/

This email has been scanned for viruses.

December 2, 2008

I know I am coming in late on this . . . my internet has been

down off and on for the past couple weeks.

I just wanted to comment on what you wrote here, Kim. Very well

written and I agree whole heartedly!

My mom just got home from shopping and my brother was with her.

To hear him come running in the door, yelling “Da!” (what he calls

me ) while he’s smiling & laughing, brings me so much joy. If we

would have listened to the “wait and see” approach, I know that my

brother would not be where he is at today. I would not be hearing his joy and

utter excitement to be home and see me and tell me all the stories of his day J.

I’m very glad for the parents who have taken the time to

step out of the box and make headway for our kids, whether the whole DS

community agrees or not. I know it works for some and I don’t need research

to tell me that. I can just hope that one day these pessimistic professionals,

doctors & parents will be shown through yet more medical research that

there is some truth to some of these methods.

Qadoshyah

Book

- Down Syndrome: What You CAN Do

www.gotdownsyndrome.net/Book/whatyoucandobook.html

Buy

it from ~ http://stores.lulu.com/gotdownsyndrome

From:

DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of

Modisette

Sent: Monday, November 24, 2008 2:41 PM

To: DownSyndromeInfoExchange

Subject: RE: [DownSyndromeInfoExchange] News alert on Nutrivene-website:

new DS/supplement study