Hey guys,

I've been very quiet on these boards lately, I know. But, that's because I've been doing tons of research for my brother in regards to the biochemical stuff. He is doing very good and is gaining alot and is progressing very well - he is sitting very well and can almost sit by himself, he is trying to crawl SO much and when he trys he is going backwards right now . Anyways, here's something I wrote on another board in response to a post about supplements and I thought I'd post it on here as well:

Okay ya'll . . . here is my post about this. We asked about the vitamins a couple mths ago and it has started us on a major research trail about the biochemical make-up of DS and MANY other things in this area. We are so glad and thankful that we put my brother on Nutrivene-D about 1 1/2 months ago (wish we had started it sooner, but praise God we have it now).

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.

- Nutrivene does not need to be FDA approved because it is a vitamin and the FDA won't approve it. But, did you know that 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 December. The link is: http://www.cddg-downs.org.uk/index.html

- 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). There is still more research that is being done on zinc. Selenium also plays a role with zinc.

- Ammino Acids and Antioxidants are very good for Down children. They lack some of these and so the supplements give them this as well.

- 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.

- 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 lots of other things as well.

Another thing also, is that there are THOUSANDS 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 it is called "A Circle Of Friends II".

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.

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!

Qadoshyah

_________________
sister to 10 siblings including boy(DS)/girl
twins - February 2005
www.gotdownsyndrome.net

Wow, thank you so much for sharing your research with us. I find it very helpful. What a great big sister you are, your broyher is very blessed to have you.

_________________
Dee Dee



Wife to Jason and Mom of 3 Boys
Austin 12/28/93
Logan 08/12/00
Colton 7/12/05 DS

Before you start any supplement you should be sure that you are aware of both sides of the discussion.

I suggest you read this:

http://depts.washington.edu/nutrpeds/faq/diagnosis/down.htm

and this:

http://www.down-syndrome.info/library/periodicals/downsed-news/01/04/001/

and this:

http://www.quackwatch.org/01QuackeryRelatedTopics/down.html

There is no scientific evidence that supports the use of any supplement in children with Down syndrome.

_________________
Tom

Dad to Beth (17) and Mikey (13 - Ds and PDD-NOS)
My Blog - Random Thinking
Find me on Facebook
Find me on Twitter as tgpaul

I should add that I have been waiting for a study on these supplements for 8 years. According to the recent posts on the site that Kokie provided, the results won't be available until Spring '06.

_________________
Tom

Dad to Beth (17) and Mikey (13 - Ds and PDD-NOS)
My Blog - Random Thinking
Find me on Facebook
Find me on Twitter as tgpaul

Kokie wrote:

- 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.

This is a theory that is not supported by any studies to back it up. Yes, over expression of the 21st gene causes increased SOD production but studies have shown that the excess SOD is not causing any of the symptoms of Ds. From one of the studies:

The enzyme superoxide dismutase (SOD) is a constitutive enzyme coded by a gene located in Chromosome 21 (21q22.1). Thus, the tissues from patients with trisomy 21 contain 50% more SOD activity. It is often suggested that the increased SOD content in the cells of Down's syndrome patients is responsible for many of the neurological symptoms of this disease. This hypothesis is not supported by most of the available data. In this paper we discuss why the increased SOD activity should not influence neuronal function and propose, instead, that the main problem may be an overexpression of other genes also located in chromosome 21 such as the beta amyloid precursor, as well as oncogenes and other Down's syndrome-related genes. We also propose that the increased SOD may be, instead, responsible for the increased incidence of Down's syndrome in children of older women. The augmented antioxidant protection resulting from an extra copy of chromosome 21 may, with time, selectively protect human oocytes from apoptosis, increasing their proportion with age, explaining the higher incidence of this disease.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11399108&dopt=Abstract

_________________
Tom

Dad to Beth (17) and Mikey (13 - Ds and PDD-NOS)
My Blog - Random Thinking
Find me on Facebook
Find me on Twitter as tgpaul

Just wanted to add that the study that is mentioned is looking at vitamin supplements, but it's not Nutrivene-D.

Helen's son Matt was part of the trial so she'll be able to give more info.

_________________
Naomi
Mum to Callum (DS) 3/03 and Kieran 8/04
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