Post by kokie on Nov 11, 2005 14:39:14 GMT -5
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: 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 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 www.lleichtman.org. This site, 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
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: 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 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 www.lleichtman.org. This site, 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
!