Einstein Syndrome: Down Syndrome with a Positive Attitude

Hey, did you see those headlines last week?

The headlines last week were hard to ignore. Antioxidants don’t help Down syndrome. Kids with Down Syndrome impervious to antioxidants and nutrients. The headline writers found synonyms: Do not benefit, Not helped by diet, and the one that is most personal to me, Supplements for Down’s children ‘waste of cash’.

Wow, so parents are being duped by these vitamin sellers?

That seems to be what they want us to believe. Since I have been giving supplements, including antioxidants, to my daughter for nearly 15 years, and since I pay out a pretty penny for the privilege, I knew I needed to look closely at the ICH antioxidant project which formed the basis of these news stories.

Stuart Logan, who headed the study is cited saying the “antioxidant and nutrient supplements costing families £25 a month had shown no positive effects of the medication.” I only know two supplement products targeted for Down syndrome which sell for this much, those are Nutrivene-D and MSB-Plus.

So these British researchers studied one of these forms of TNI and proved that they have no positive effects???

Umm, no. The antioxidant and folinic acid mix which was studied by the ICH group was not the “£25″ product at all.

Nutrivene-D has 54 separate nutrients, MSB-Plus has a similar formula. The formula used by the ICH project included only selenium 10 µg, zinc 5 mg, vitamin A 0.9 mg, vitamin E 100 mg, vitamin C 50 mg, and folinic acid 0.1 mg. So it seems that we have a group who studied one formula, and then went to the news media and made negative claims about a vastly different formula. Astounding.

OK, so they didn’t actually study Nutrivene-D or any form of TNI. But the results apply, still, don’t they?

Sure, they got the results that they got. The big question for me and other DS parents is, “What do the results mean?” Researchers gave antioxidants and folinic acid to some babies with Down Syndrome. And then they measured some outcomes. Finally they reported that those particular outcomes were not affected by the nutrients that they gave. The reported results (or lack thereof) are entirely dependent on whether the outcomes measured were the ones you would expect to be affected by the nutrients.

You’ve lost me. Come again?

Well, let’s look at antioxidants. Unless you’ve been living in a cave you’ve seen and heard claims about antioxidants and their benefits for health, not just in Down syndrome, but for everybody. Just google “antioxidants health” and start reading. This is a big reason why you are supposed to eat your fruits and vegetables. Health.

Antioxidants are a bigger concern in Down syndrome because of the triplicated SOD gene. A large component of every form of Targeted Nutritional Intervention is the inclusion of antioxidants…. for health! One of the most common anecdotes from parents who begin using Nutrivene-D is that the child is so much healthier. Common upper respiratory infections clear up, become less frequent, shorter duration. The kid just feels better.

This anecdotal evidence is supported by the scientific evidence of the effect of antioxidants on the immune system. A healthy immune system requires an adequate supply of antioxidants.

And, your point is…?

The main thing supplemented in the ICH study was antioxidants. The major result that I would have expected from their formula would be improved health. And guess what the  researchers did not report on?

Health?

Right. There is no reporting of the frequency or duration of sickness, infections, colds, flu in these babies who were studied. It is not even reported that health outcomes were recorded or measured. Yet the headlines blare that people with Down syndrome are “impervious” to antioxidants.

But they did measure stuff, right?

Yes, they recorded the age at which the babies reached certain developmental milestones. They rated all the babies on the Griffiths Developmental scale and reported Griffeths Quotients (GQ). They were looking for big differences in the developmental progress of the different groups of kids in the study.

And they found no difference developmentally.

Well, that is what the news articles say. But if you read the study you see something else. They found no “clinically or statistically significant” effects. Let’s look at the actual results that are reported:

Group A (which received antioxidants and folinic acid) GQ = 58.7.
Group B (antioxidants only) GQ = 57.4
Group C (folinic only) GQ = 57.8
Group D (placebo) GQ = 56.1

Notice how the GQ is higher for group A than it is for D?

Translation: The group which received antioxidants and folinic acid did, in fact, have better developmental scores than the placebo group, but the results were not statistically significant.

Is that the only developmental result reported?

No. They also report this:

Supplementation also had no effect on the recorded
age at attainment of motor milestones. Comparing
infants allocated to antioxidants with those who were
not, the hazard ratio for age of sitting without support was
1.10 (95% confidence interval 0.77 to 1.56) and that for
standing was 1.25 (0.88 to 1.78). The results for children
on folinic acid compared with those not on folinic acid
were 1.25 (0.88 to 1.78) for sitting and 1.14 (0.76 to 1.71)
for standing. [emphasis added]

Whoa! Now you really lost me!

First let’s define hazard ratio. “Hazard ratio” is a comparison of when two groups reach a certain milestone (i.e. sitting, standing, etc.). If the hazard ratio is above 1, then the first group reached the designated point before the second group. If the hazard ratio is 2, for example, the first group reached the milestone at a rate twice that of the second group.

Now look back up at the hazard ratios from the study. The above data shows that the infants who received either antioxidants or folinic acid achieved the milestones of sitting and standing at a faster rate than the controls. However the results were not statistically significant.

Ok, let’s review. What exactly did they prove?

Good question. So far we have seen that if you give a supplement that is not TNI that you might get some improved developmental results, but you might not.

Come on, now… surely there were other outcomes measured.

Well, yes. They also drew blood and measured the levels of SOD and Glutathione Peroxidase (GSH-Px). And, not surprisingly, they found that the ratio of SOD to GSH-Px was pretty much the same in all four groups of kids.

What do you mean “not surprisingly”? And what are SOD and GSH-Px?

I’ll answer your second question first. If you look here, or here, you will see a better explanation of the triplicated gene for SOD and the resulting problem of the not-triplicated GSH-Px than I’m going to give you here. But, basically, there is too much SOD and not enough Glutathione Peroxidase, and that means that in Down syndrome there is extra hydrogen peroxide hanging around in the cells, damaging them. The whole idea of supplementing antioxidants in DS is that there isn’t enough GSH-Px to sop up the hydrogen peroxide, so their bodies need to call in other antioxidants to do the job. This causes a need for additional antioxidants above what is normally available in the diet.

Ok, now about that first question…

No one associated with promoting or selling vitamins for use in DS has ever suggested that supplementing antioxidants will increase levels of GSH-Px. Supplementing antioxidants does not increase the levels of Glutathione Peroxidase. No one claims that it does. Not the makers of Nutrivene-D, not the makers of MSB-Plus, not the owners of the various nutritionally oriented email lists…. nobody.

So, these researchers take a group of DS babies, give them some antioxidants for 18 months, and then measure their levels of SOD and GSH-Px. And, not surprisingly, they find that there is no difference in the blood level of GSH-Px resulting from the antioxidants.

Because antioxidants don’t increase the levels of GSH-Px?

You got it.

So let’s review again. What exactly have they proven?

1) If you give a supplement that is not TNI that you might get some improved developmental results, but you might not.

2) If you supplement antioxidants that have never been shown or claimed to increase glutathione peroxidase, your results won’t show increased glutathione peroxidase.

3) If their readers don’t read the actual study closely, the media can get away with using words like “waste of cash” and “impervious to antioxidants” in news articles.

Is that all I need to know about this study?

There’s more, but that is enough for today.

UPDATE: Waste of Cash! part 2 is here.
UPDATE: Waste of Cash! part 3 is here. Part 4 on long term negative outcomes is here,
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Edit: link fixed in the 3rd paragraph, pronoun corrected in paragraph on GSH-Px.

Filed under: antioxidants, medical, nutrition, TNI Tagged: | antioxidants, Down Syndrome, ICH study, Nutrivene, supplements, TNI, vitamins