This Q&A continues a discussion of recent research on nutritional supplementation in Down Syndrome begun here and continued here.
Thanks for the breather. My head is hurting after looking at all those charts and diagrams. But I think I understand the folinic acid issue now.
Good. Today I want to talk about benchmarks; but before we leave the issue of folinic supplementation, let’s talk for a minute about the various nutrients that you saw in those charts.
Just don’t make this a test, ok?
I’ll try to go easy on you. Nutrivene-D includes not only folinic acid, but also folic acid, Vitamin B-12, methionine, Vitamin B6 and TMG. The particular formula in Nutrivene was based on in vitro studies done by Pogribna M. and others and published in ….
Wait… wait… wait…. I’m nodding off again. First, what is “In Vitro”?
It means “in glass.” Marta Pogribna and Jill James recruited a bunch of us DS moms to donate our blood, the blood of our DS child, and the blood of a sibling. They cultured our blood cells, and then put them in test tubes (glass) with a variety of solutions of nutrients, and measured the levels of the various chemicals in the folate and SAM cycles.
Cool. So that research was based on your blood?
Um hmm. And Mary’s. And her brother’s. The result was that the ingredients in the Nutrivene formula were chosen and balanced based on what was learned in that study. The nutrients are targeting the specific biochemistry of people with Trisomy 21.
Now, here’s my point: It is hardly likely that giving only folinic acid will accomplish what is accomplished by a careful formulation of folinic acid, folic acid, methionine, TMG, B6, and B12.
It does seem like one is more likely to produce results than the other.
This is why I get so irritated when I am told that what I am giving my daughter is “a waste of cash,” and that she is “impervious” to supplements. They didn’t test what I am giving her.
So, let’s talk about the benchmarks. What is that?
Benchmarks are measurements you take before you start an intervention.
Like weighing the kids before they entered the study?
Right. Then after they are in one of the study groups for a period of time you weigh them again. Of course, the ICH didn’t report weights at all.
Did they use benchmarks in the ICH supplementation study?
No. If they gathered that data, they didn’t report it.
Here’s why benchmarks are important. In Down syndrome, there is a huge variation in development from one baby to another. In the first year, the issue of heart defects makes a big difference; the kids with heart issues put a lot of development on hold until the heart is repaired and they have the energy to do other stuff. Aside from heart issues, many other factors affect the rate of development.
Ok. So?
The results of a large population of DS babies, averaged together, is going to show a large variation in developmental achievement. But if you had benchmarks for the individual children, you could compare the rates of developmental change from one group to the next.
And this study didn’t do that?
No. Here is what Peter Elliott, director of the DSRF (one of the sponsors of the study) wrote:
It is usual to establish benchmarks before assuming any intervention is needed or effective. I don’t see these benchmarks from the start of the study. The only information is one year after the baby was in the study. So if you don’t know where you have been, you can’t assess changes. All you can do is average all the data for each group and compare that average to the average data for the babies on the placebo. If you had the spread of that data for each group this might indicate more consistency from one group to another.
Seems to me that what you want is a study of Nutrivene-D, with benchmarks, and with many more variables being measured.
That’s what I want. That is what parents have been clamoring for for years. But that takes money. And money doesn’t grow on trees. Meanwhile, I have seen nothing in this study to disuade me from continuing to give this supplement to my daughter.
Filed under: Health, TNI, antioxidants, biocchemistry, nutrition | Tagged: Down syndrome folate, folinic acid, nutrition, SAM, supplements, Trisomy 21
