Sunday, March 30, 2008

Pediasure . . .

Someone on the ES list asked about Pediasure and had concern about the levels of the nutrients in it. I researched Pediasure out some and gave them some info, so I thought I'd post on here the information I found out:

In regards to the Pediasure and the levels of vitamins/minerals . . .

I looked up the ingredients of Pediasure. Honestly, it does not have very
high amounts of vitamins/minerals in it, does not have all the ones which
are necessary, and it also has some which should not be given.

- it has Iron in it. It is a small amount, so it's not that big of a deal.
But, iron shouldn't be given most of the time, unless it is needed (low
iron, etc).

- The amount of Zinc in it is a crazily low amount. It is so low, it's
almost not worth having any zinc in it at all! Zinc is typically low in
those with DS (low zinc can equal low growth rate too!), and giving the
amount of zinc that is in Pediasure (very low amount), is not very
beneficial. To give you an example . . . my brother takes around 34mgs or so
of zinc a day. The amount of zinc in 100 cals of Pediasure is 0.60mgs.

- it has Copper in it. It has 100mcgs of Copper per 100cals of Pediasure.
Copper is typically high in those with DS because of the overexpression of
the Cu/Zn SOD gene. Copper should not be given unless it is low, which most
of the time it is not.

Those are the main things I notice in it.

Friday, March 7, 2008

Post a comment on the Vitamin Information Center's article - "Vitamins Found No Help for Down's Syndrome"

An article on the antioxidant & folinic acid study came through the Google Alerts. It's an article on the Vitamin Information Center website. The title of the article is Vitamins Found No Help for Down's Syndrome. I posted a slightly edited version of my letter to the Washington Post editor. You can see the article from the Vitamin Information Center at the link below.

Post a comment to it, so that more accurate information on TNI can be seen there!

Sufficient Amounts of Antioxidants

I posted the response to the antioxidant & folinic acid study from Dr. Hickey on the DSTNI yahoo group.

Richard asked, "Do you know if NVD contains the amounts of antioxidants Dr. Hickey deems necessary?"

I thought that was a great point, so I looked it up and here's what I found:

For Vitamin C, Dr. Hickey says, "Assuming a weight of 8 kg for a 7 month old child, a minimal therapeutic ascorbate dose of 140 mg/kg gives 1120 mg, i.e. approximately one gram."

In Nutrivene-D the Vitamin C dosage for a 7 month old who weighs 9kgs or less is 200mgs.

For Vitamin E, Dr. Hickey says, "Assuming 40 IU per kg, a minimum dose of about 320 IU of a high quality, natural form of vitamin E would be required for a 7-month-old child."

In Nutrivene-D for a 7 month old child, weighing 9kgs or less, they would get 80 IU.

So, the one is lower than what Dr. Hickey may deem necessary, but the other is higher than his minimum dose.

Thursday, March 6, 2008

News article, "Supplements Don't Help Down Babies" & letter to editor

This news story came through the Google Alerts the other day and I just couldn't stand it anymore. I've seen plenty of these news headlines proclaiming that supplements are no good for people with DS.

So I wrote a letter to the Washington Post editor about this news article. Below is the article and the letter to the editor.

~ Qadoshyah

Supplements Don't Help Down Babies

Tuesday, March 4, 2008; HE02

Giving babies with Down syndrome supplements containing folate and other vitamins does nothing to improve their development, British researchers reported last week. The finding, published in the journal BMJ, may dampen parental enthusiasm for vitamin supplementation, which is widespread among families with a mentally retarded child.

To test a hypothesis suggested by previous studies, researchers at Peninsula Medical School in Exeter randomly assigned 156 babies younger than 7 months who had been born with Down syndrome to one of four groups. The first received daily supplements containing folic acid, another got antioxidants including Vitamin E, a third group received both and a fourth was given a placebo.

Compliance with the regimen was verified by blood tests, and neither parents nor researchers were told which substance the babies had received until the trial ended.

After 18 months, researchers assessed the cognitive and physical development of the infants. They found that supplementation had no effect on the achievement of developmental milestones, such as the ability to sit or stand unassisted, or on the number of words a baby understood or said.

"Parents who choose to give supplements to their children need to weigh their hope of unproven benefits against potential adverse effects from high-dose, prolonged supplementation," the researchers said.

-- Sandra G. Boodman


Dear Editor,

I read the article, Supplements Don't Help Down Babies, by Sandra Boodman.

I wanted to write and share some more information about the study which Sandra wrote about. The study's name is, Supplementation with antioxidants and folinic acid for children with Down's syndrome: randomised controlled trial.

The study claims that supplementation with antioxidants and folinic acid showed no benefit to children with Down syndrome. But, the study does not use appropriate dosing levels of antioxidants and therefore cannot truly see what benefit supplementation has on children with Down syndrome.

The study used very low doses of antioxidants in these children. Oxidative stress is known to be a large part of Down syndrome. In order for antioxidant supplementation to really help the individual with Down syndrome, much higher doses of supplements need to be given.

I am not promoting "mega-vitamin therapy," that is history. People just need to realize that higher doses (not mega doses though) of supplements need to be given to see much of any benefit.

It also should be noted that if someone reads the full text of the study, there were some differences between the children who took the supplements and the placebo group. The differences were not "statistically significant" so they are not reported in the abstract of the study or in the media.

Something else that needs to be acknowledged is the use of the RDA for people with Down syndrome. The RDA is for "generally all healthy people." This may not include people with a genetic abnormality which may make their metabolism and biochemical needs different than the general population. Sure, the RDA may be a good guideline, but it cannot be used as the standard for people with Down syndrome. The researchers did note this in their study. They say that the doses that were given to the children "may have been inadequate to affect biochemical pathways."

My 3 year old brother has Down syndrome. We give him Nutrivene-D Advanced Daily Antioxidant Supplement. It has proven to be extremely beneficial and helpful to him. It has changed his life dramatically. If it had not been for us starting him on Nutrivene-D at 8 months of age, he would not be as healthy and thriving as he is today.

I hope that people will not just believe all the news headlines that say all kinds of things ranging from "Supplements Don't Help Down Babies," to "Antioxidants don't help Down syndrome," or even "Supplements for Down's children 'Waste of cash'."

~ Qadoshyah Fish

Response to the folinic acid & supplement study - Were sufficient antioxidants employed in this study?

I just happened to look at some of the responses to the recent study on folinic acid & antioxidants in DS. I thought this response was a great response! He (Steve Hickey, PhD) explains how the study used such low doses of these nutrients that it could not benefit the children like they need to.

I also liked the last statement of his response. He says,

"Moreover, the unfortunately common propensity to give insufficient and inappropriate nutrients in trials is potentially harmful. Reports based on low intakes may prevent subjects with Down's and others from gaining benefits which are obscured by these unsuitable studies."

~ Qadoshyah

Were sufficient antioxidants employed in this study?

Steve Hickey PhD,
FCET, Staffordshire University, England, ST16 9DG,
Hilary Roberts PhD, Andrew Hickey

The paper by Ellis et al. illustrates a widespread problem in medicine: failure to understand the actions of antioxidants in disease. The study provides little evidence on the question of whether subjects with Down's might benefit from dietary antioxidants, because, as the authors themselves suggest, the low doses of supplements "may have been inadequate to affect biochemical pathways".

The disease mechanism for Down's syndrome arises from an increase in the activity of redox active enzymes. This leads to excess hydrogen peroxide, which causes oxidation and free radical damage in the brain. By definition, antioxidants can prevent such damage, thus potentially forming an appropriate treatment. The crucial research question is whether the appropriate dietary antioxidants can be given safely in doses sufficient to influence the pathology of the disease.

In order to influence brain pathology, dietary substances must enter the brain in sufficient concentration to act as antioxidants. The levels of primary antioxidants (vitamins C and E) used in this study were similar in magnitude to the corresponding recommended dietary allowance (RDA) levels. The subjects were young children, who would normally require lower doses than adults. However, it is important to remember that the antioxidants were intended to treat disease and, hence, we are in the realms of pharmacology rather than nutrition.

Claims for vitamin C as an antioxidant therapy involve very high doses. According to popular belief, one gram is a high dose. Contrary to this, prevention of colds (80-90%) requires doses of 10g per day or above; treatment calls for doses an order of magnitude larger. So, for example, claims for treating a cold effectively (Klenner, Cathcart, and others) [1] involve doses in the range 30g-150g per day.[2] Below these intakes, clinical effects are smaller and are more variable.[3]

The 50mg daily doses of vitamin C used in this study are substantially below pharmacological levels. Assuming a weight of 8 kg for a 7 month old child, a minimal therapeutic ascorbate dose of 140 mg/kg gives 1120 mg, i.e. approximately one gram. Thus, the dose of ascorbate employed in this study was approximately 1/20th of the minimum required. Similar considerations apply to the other nutrients. The short half-life of vitamin C means dosing frequency is also important (6 hourly or less)[2].

Subjects took 100mg of "vitamin E"; the form was not specified, although blood á-tocopherol levels were measured. Vitamin E is not a single molecule, but a range of substances that can prevent lipid oxidation in vivo. Numerous different molecules show vitamin E activity, particularly the tocopherols and tocotrienols; each has a specific pharmacology and distribution in the body. Synthetic forms, such as dl- alpha-tocopherol, are often used in studies, though they are far less effective than the naturally occurring forms.

To act as an antioxidant, vitamin E is required in higher intakes than previously realised.[4] Indeed, Balz Frei, of the Linus Pauling Institute, has described almost all clinical trials of vitamin E as "fatally flawed" because they used an insufficient dose of vitamin E.[5] To act as an antioxidant in vivo, an adult requires between 1600 and 3200 IU. Assuming 40 IU per kg, a minimum dose of about 320 IU of a high quality, natural form of vitamin E would be required for a 7-month-old child. The 100mg (synthetic?) dose employed may not act as an effective antioxidant in the brain, particularly in the absence of high levels of vitamin C.

The study employed folinic acid (0.1mg), selenium (10 ìg), zinc (5 mg), and vitamin A (0.9 mg) at low doses. Ellis et al. note that the response to folate may be enhanced by adding selected nutrients (methionine, methyl B-12, thymidine, and dimethylglycine). The specific forms of the nutrients employed was not made clear, for example forms of selenium, such as sodium selenite and methylselenocysteine, differ in pharmacology and antioxidant properties. Although we use vitamins C and E to address the main research problems, the selection and dosage of all nutrients in this study was suboptimal.

Biochemical measures in the study suggest that supplementation did not affect oxidative stress levels; this supports our suggestion that the doses employed were too low to act as in vivo antioxidants in these subjects.

The pathology of Down's syndrome has a specific oxidative mechanism. The laws of physical chemistry suggest there is little point carrying out studies using doses of antioxidants that are too low to provide the intended action: prevention of oxidation in the brain. It is possible to select suitable dietary antioxidants that can enter the brain and provide them in sufficient doses to have the desired biophysical effect.

This study did not address the role of antioxidants in Down's, as it did not use sufficient nutrients to act in vivo. Moreover, the unfortunately common propensity to give insufficient and inappropriate nutrients in trials is potentially harmful. Reports based on low intakes may prevent subjects with Down's and others from gaining benefits which are obscured by these unsuitable studies.

[1] Cathcart R.F (1985) Vitamin C, the nontoxic, nonrate-limited antioxidant free radical scavenger, Medical Hypothesis, 18, 61-77.

[2] Hickey S. Roberts H. (2004) Ascorbate: The Science of Vitamin C, Lulu press.

[3] Cathcart R.F. (1981) Vitamin C, Titration to Bowel Tolerance, Anascorbemia, and Acute Induced Scurvy, Medical Hypothesis, 7, 1359-1376.

[4] Roberts L.J. Oates J.A. Linton M.F. Fazio S. Meador B.P. Gross M.D. Shyr Y. Morrow J.D. (2007) The relationship between dose of vitamin E and suppression of oxidative stress in humans, 1388-1393.

[5]Frei B. (2007) in Vitamin E Trials 'Fatally Flawed', ScienceDaily, Sep. 26.

One more response by Miriam

Here's one last response by Miriam (from Einstein-Syndrome) to the folinic acid & antioxidant study ~ Long term negative outcomes of vitamin therapy.

Sunday, March 2, 2008

John Marrs!

Jenn Marrs' son, John, has been called "The Wonder Boy" on DS listservs and in the Circle of Friends II book.

Jenny has done a lot with John to exceed what they were told John would, or more like it, would not do. John's new website is . Jenny has a lot of very helpful and resourceful information on that site. I remember reading her program that she did with John quite a bit when my brother was younger.

Jenny is contributing several articles to our book ;). Thanks Jenny!

More response to the folinic acid & antioxidant study

Miriam (from Einstein-Syndrome) has written part 2 & 3 of her response to the recent study on supplements in DS. Here are the links to that:

Part 2:

Part 3:

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