More on Gingko, DHA, Nutrivene

After my last post, I received comments and lots of emails with questions. I'll try to tackle some of them here, but I encourage everyone to do their own research too. I am a research nerd when it comes to my girls and quite honestly, I think we all need to be.

We use Nutrivene (daily supplement and nighttime formula only ... we can't use the enzyme due to reflux), Ginkgo and DHA/Omega 3 ... as well as Juice Plus, in gummy form. I am looking into adding Vitamin D into the mix, as that is also now being recommended as an additional supplement. I also read something the other day that talked about taking Vitamin D3 as an alternative to the flu shot, since there is so much drama going on concerning the flu and H1N1 shots. That in and of itself is a whole other post.

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So ... when I first started researching Nutrivene, I quickly learned that the use of it is something that is pretty controversial. I have seen, heard and been involved in many arguments about the use of it, but at the end of the day ... this is what my husband and I decided was right for our family and that is that.

The biggest argument I hear about Nutrivene is that "there are no double blind studies". First off, I'd be surprised if there would ever be a double blind study done. It is far too expensive to do such a thing when you are working with such a small population. Do we really need a study done on people anyway? Why can't we look at the numerous studies that have been done showing the different chemical imbalances and "out of whack" things that people with Down syndrome do have going on inside of their bodies? There is enough long term research that has been done to satisfy me ... all of it shows great results.

Nutrivene is comprised of vitamins that are specific to the body of a person with Down syndrome. For example, there is extra zinc because they tend to have low zinc levels; there is no iron because they tend to have high iron stores. It is my view that if the vitamins don't hurt my daughters, then why not? We do regular blood testing to monitor their blood levels ... but even so, never have I ever heard of anyone finding that their child had too high of levels while taking Nutrivene.

So you may be asking, "Have you seen a difference in your girls?" If I had a dollar for every time I've been asked this question, I'd be a millionaire. Payton has been on Nutrivene since she was three months old. I did notice that she was much more alert after we started her on it ... I liken it to waking her brain up. There have been times that she has been off the Nutrivene for a few weeks here or there, but I have never noticed a huge difference in her externally. Nika was also started on Nutrivene as soon as we brought her home. Since we didn't know her well at that time and she was experiencing a lot of adjustments in her life, I really have no before comparison for her.

Many, many people think that we use Nutrivene because we think it will help the girls talk, or help them walk sooner, or whatever. While it might help with some of those things ... I have no idea, really ... we really use Nutrivene for what it does on the inside ... getting external benefits would be a plus, for us. The extra chromosome that comes courtesy of a T21 diagnosis causes havoc inside their bodies. It causes oxidative damage to DNA, which in turn leads to many things, including earlier onset of Alzheimer's Disease.

A few random things to ponder regarding Nutrivene ...

* 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.

* 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, 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 is a link to a very good article about Iron, SOD and that process.

* A lot of people with DS 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 a lot to do with thyroid functioning properly. There are zinc ions that are connected to the thyroid and its functioning properly. 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 people with DS 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 people with DS are normally low in and that amino acid plays a big part in helping to deal with the SOD process. Thus, people with DS 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 muscle tone.

* The nighttime formula is not necessarily to help them sleep, it is to promote growth while they are sleeping.

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With regard to Gingko ... I have heard that it is only recommended for kids age three and above. That said, I know people who have infants with Down syndrome on it. To each their own.

So ... the changes we have seen ... my girls have only been on Gingko for a little less than a week and yes, I'm seeing the difference ... mostly in Payton because she is more verbal than Nika.

Payton - the biggest thing is her speech. She has turned into Chatty Cathy, even if sometimes using approximations. She definitely is speaking more without me having to prompt her and she is giving me 2-3 word phrases that I can understand.

Examples: Saying "more please", whereas before she always just signed it. The other morning after Nika peed on the potty, Payton was right there with us and I said to Nika, "Good girl!" Just then, Payton said it too ... "Good girl!" WTF?! Where did that come from?! Just a lot of things like that.

Today was the first day that Payton had a private speech session since being on Gingko. Her ST about fell off her chair with how chatty Payton was ... and with how much longer Payton was sticking to certain tasks (i.e. reading a book). She mentioned that today was the longest that Payton has ever read/played with a certain book without moving on to something else. Concentration, I guess is the word I am looking for.

Nika - I do think I notice a cognitive aspect going on with Nika. For one ... and I totally think this is related ... she has not really been wanting or needing to suck on her fingers. You might think I've totally fallen off my rocker, but I really think having a clear mind is helping her with this. She is able to focus better on the task at hand, as well as finding other things to do. I know her well ... I can just tell.

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Did we consult a doctor prior to giving our girls these supplements?

Yes, we did. Did they all agree? Not necessarily. Were any of them dead set against it? No.

We take our girls to see Dr. Leichtman, who is an advocate for the use of TNI ... and pretty much a Down syndrome guru, for lack of a better characterization. We have consulted him in the use of all the supplements and he has done extensive research on them.

I also have discussed the supplements with our local geneticist, who is neither here nor there. She agrees that if they are only vitamins, then what can it hurt as long as we are monitoring blood levels. Interestingly enough, she is always asking me questions about things I've noticed. She ... and many other doctors ... would love to see the more in depth studies, but like I said ... I don't think it will happen anytime soon.

Where do you get the DHA and Gingko?

I linked to them up above. You can get them various places, or directly from Nutrivene's website. I get all my dosing information from Dr. Leichtman, because it isn't always what the label says for our kids. If you are interested in beginning this regime, I highly suggest that you join the DSTNI Yahoo Group ... there are plenty of knowledgeable people that post there, including Dr. Leichtman.

As a quick reference for Gingko ...

*1000mg of Ginkgo Extract equals 80mg of Gingko Biloba (we actually use the extract)
*Ginkgo Biloba dosages have increased to 5.5 mg per kg (2.2 pounds) of body weight

For DHA ... when Payton was younger, she received 1/4 tsp of the DHA liquid. Now, she gets 1/2 tsp, which is the dosing information on the bottle. I'm not exactly sure when they move up to 1/2 tsp or what the guidelines are on that ... need to check on that. Either way, both my girls are getting 1/2 tsp for now. I have heard info from some developmental pediatricians, however, that they are recommending an even higher dose. Not sure ...

What about MSB+?

I personally am not a fan of MSB+, but that is just me and the research that I have done. I know there are lots of people who use it because the dose is smaller and it tastes better, but ...

MSB+ has a few things in it that are either not good for people with DS or they already overproduce it. For example, it has iron it. It also has L-Cysteine in it and generally people with DS overproduce this amino acid, which means you are then dealing with 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.

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So ... all of this said, there is so much more to say. I am positive that there are people reading this and disagreeing with me, and that is okay too. If it remains respectful, I welcome dialogue here regarding this topic. There are lots of parents wanting information, so if you have it ... let's give it to them.