Down syndrome and Nutrivene (Vitamin Supplement)

Okay, we researched the vitamins out for my brother when he was 8 months
old. We had found out about them way early on, but we were told that they
are just a waste of money. I wish we would have researched the vitamins out
when we were first told about them, but at least my brother was put on them
(Nutrivene-D) when he was 8 months old. The vitamins, IMO are VERY important
to Down Syndrome. Not just any ol' vitamin, I am talking about Nutrivene-D
(formulated for DS by INI - http://www.nutrivene.com). There is another vitamin
supposedly formulated for DS called MSB Plus. I HIGHLY do not recommend that
one, there are several things in ti, that are not in the Nutrivene-D,
because they have been shown not to be good for Down Syndrome. The main
argument I have heard against the vitamins, is that there is no double blind
study to show that they work. Which, in fact, there HAVE been double blind
studies done and it shows that they do work (I can scan a copy of it and
email it to anyone interested). There are VERY many benefits to Nutrivene-D.
A lot of people will notice a change in their child after starting the
vitamins, but even if someone does not notice a change in their child, I
strongly believe that the vitamins are still VERY beneficial. If you know
all the biochemical stuff that is going on in the DS body, that we cannot
see and the vitamins help counteract that process. I believe Down Syndome is
a progress mental retardation and these vitamins give the intervention that
is needed. We also feed my brother foods that are high in anti-oxidants and
amino acids (lots of berries and other foods) and omega-3's (fish)

Here's a summary of some of the benefits of the vitamins:

"Here's some stuff, I don't want to make a controversy at all, but I am just
pointing out the nutritional/biochemical facts/info for you guys to take it
or leave it.


- Children with DS produce too much Superoxide Dismuatse (SOD) which then
turns into hydrogen peroxide and starts killing cells. They have more SOD
and their body cannot take care of it, like us, because the SOD enzyme is on
the 21st chromosome. Iron aids in the SOD process. Thus, by giving added
Iron (like PolyViSol has in it and I don't know if MIGHT-A-MINS does or does
not), it produces more cell death. Cell death starts occuring after 4 months
of age. So, one thing that you do not want to do is give added iron, unless
of course the child is iron deficient. Here's a link to a very good article
about Iron, SOD and that process:
http://www.einstein-syndrome.com/biochemistry_101/concern_iron.htm .

- Nutrivene does not need to be FDA approved because it is a vitamin and the
FDA won't approve it. But, Nutrivene is manufactured in an
FDA approved/inspected pharmacy and that all of their guidelines are under
FDA guidelines.


- There is a double blind placebo study being done on giving people with DS
vitamins and supplements and the results will be out this Spring. The link
is: http://www.cddg-downs.org.uk/index.html . And, just so you know, there
have been other studies done!


- Alot of Down people are also deficient in Zinc. Zinc is, of course, a very
big part of the immune system and if they are zinc deficient, then they will
have a weaker immune system. It also has alot to do with thyroid functioning
properly. There are zinc ions that are conected to the thyroid and it
functioning properly. You can see more info at http://www.dsrf.co.uk (type in zinc)
or http://www.pubmed.com (type in zinc thyroid syndrome). There is still more
research that is being done on zinc. Selenium also plays a big role with
zinc.


- Amino Acids and Antioxidants are very good for Down individuals also. They
lack some of these and so the supplements give them this as well.
Antoxidants play a big role in counteracting the SOD process and so do Amino
Acids. There is an amino acid that DS people are normally low in, that amino
acid plays a big part in the help of dealing with the SOD process. Thus,
Down Syndrome people have a whole extra enzyme of the SOD (since it is on
the 21st chromosome), but still have "normal" levels (levels that we have)
of this amino acid, thus making it hard for their body to deal with this
stuff.


- Alpha-Ketoglutaric-Acid is a big proponent in cartilage and helping with
stability to the cartilage. By supplementing this, they have found that it
helps with tone very much so. We have also noticed my brother's tone is
better and other people have noticed it too.


- Alot of Down people are L-Tryptophan deficient. I don't know if you know
what that does or not, but it helps with sleep. We did notice that my
brother is sleeping more like his sister now. He used to sleep hardly at
all, it seemed!


There are LOADS and LOADS of other things as well, this is just barely
scratching the surface, the info above.


Another thing also, is that there are THOUSANDS (recent firgure I was just
told by a dr is 25,000) of people who are on Nutrivene and the vitamin
supplements. They all have very good "proof" that this really does work with
their down children. As far as were concerned, there doesn't need to be a
double blind study done to show that this stuff "works". The research and
information seems extremely overwhelming.


- There is a doctor who is a huge promotor of this stuff (he is not the only
one, there are alot more). His name is Dr. Lawrence Leichtman and his site
is http://www.lleichtman.org.

- This site, http://www.einstein-syndrome.com also has TONS of info about this
stuff. A very good book about TNI and the biochemistry stuff is called "A
Circle Of Friends II". There is an ES listserv off of the site I just
mentioned, they are one of the best ones I have found, talk all about the
biochemistry, medical and health issues.


Oh and yes, the NuTriVene does not taste that good. We used the chocolate
syrup for a bit there and then looked at the ingredients and it has soy in
it (and that is a thyroid suppressant - a goitrogen). So, right now we are
using regular fruit spreads, with no added sugars (not jams and jellies). We
got them from Trader Joes. The spreads, jams/jellies cover the flavor pretty
good also (my brother likes them :)!).


There is another DS supplement called MSB Plus. I do not suggest that one at
all. Because it has a few things in it that is either 1) not good for DS
people or 2) they already overproduce it. For example, it has iron it, it
also has L-Cysteine in it and generally DS individuals overproduce this
amino acid and then it can lead to a toxic product. From the research that
has been done so far, they say not to supplement with it until it is proven
to be safe."


So, there's that for now . . . Until later . . .