Tuesday, September 29, 2009

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.

18 comments:

  1. Thanks for sharing this- I know you've sent me this before-still on the fence but I think we'll end up trying it at some point. Is Dr. Leichtman near you? I remember reading he was in VA. Is it hard to get an appt. with him?

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  2. Thanks Bethany, I just arrived home from the Doctors Aden’s blood test showed Thyroid problems again. And I’d just started a vitamin recommended by our regular Doctor, it has iron in it. Phew so glad you posted, I was thinking of getting the MSB also.

    Thanks again.

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  3. We got our D3 "Yummi Bears" at the Vitamin Shoppe. I'll do some research to determine if there is a better option and let you know. Unless you beat me to it. : )

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  4. I've never heard of Chatty Cathy lmao

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  5. Linda ... thanks for letting me know. I think that will be a great option for us. Where do you get your Omega 3 gummies? I could probably google it, but just wondering.

    Adrienne ... you do not need to see Dr. L to use NTD. Many people do, however, since he knows so much about it. He is based in Virginia Beach, but if you look at his site, he does traveling workshops.

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  6. Whoa, totally saving this post for when I have kids! This is some awesome info!

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  7. Thanks for this, Bethany! I am sure it took you quite a while to put this together and I appreciate it. It definitely gives us a great jumping off point for our own research. ~Courtney

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  8. Thanks for this, Bethany! I am sure it took you quite a while to put this together and I appreciate it. It definitely gives us a great jumping off point for our own research. ~Courtney

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  9. Bethany, Girl your ROCK! I am so appreciative of all your research and yes I do mine too, but I don't know whenever I talk to you I just feel so much better. :)

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  10. Thank you for all of this valuable info. I have printed it out to keep for reference.
    Amy

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  11. when my FIL goes to USA, he always gets multivitamins for Elias, Elias also took Omega 3 gummies, but they are over now, he bought it on target or walmart
    http://www.amazon.com/Lil-Critters-Omega-3-Gummy-Booster/dp/B001459FCY

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  12. Bethany,
    As everyone else said - thank you so much for taking the time to write all of that information in your blog post!!! I have done tons of research (i am also a research nerd) but just am not sure where to go with my research or what to do. it REALLY helps to hear what you are doing with your girls and what you find works! I talked to our geneticist at our last appt and he had good things to say about nutrivene and was very willing to help us with a protocol for whitney if we wanted to start nutrivene - but he also said that he thought she was doing very well with whatever we are doing right now, so if we wanted we could continue with that. i am doing a liquid multivitamin that i get from whole foods + dha but i have not been doing ginko and really appreciate your info. we just had a msg yesterday that whitney's bloodwork came back showing somewhat elevated levels for her thyroid and we are to wait for 3 months before doing anything about it to get another blood test to see if her levels change. i asked them to check her zinc levels when we did the bloodwork but that hasn't come back yet.

    THANK YOU again for all of your hard work writing the post to share with everyone!!!!!!!!

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  13. Great post, Bethany! I felt like I was reading something I had written, LOL!

    We use Vit. D3 drops (Carlson's D drops) for my brother. They really don't have much of any flavor.

    Qadoshyah

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  14. thank you so much for the more in-depth post!

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  15. I could just hug you for this post.....I totally needed this info...and it was the kick in the butt to get moving in this area!!! I started Omega 3 Gummies and a multivitamin a few months back...but now need to head to the cupboard to see what exactly is in them to make sure I am not giving him extra of things he already has too much of naturally anyway...

    I have not done a blood test yet...did you have your pediatrician do this or where did you go? Sadly I am not convinced my pediatrician would know what to do with the information. We did have Reid's thyroid checked once when he was having his adenoids taken out...but now that I think about it, we never got the results. hmnn...that's no good, I need to call on that!

    Bethany...thank you for sharing your hours and hours of research.... it is so, so helpful!

    Cheri

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  16. Organic supplement is better than synthetic ones because of its components. It provides the natural nutrition the body requires and is chemical free. Synthetic vitamins maybe harmful and can cause damage to the body's system.

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  17. Hi Bethany,

    I am currently expecting ( Edd 5/23/10 with prenatal diagnosis of t21) have been reseaching The nutrivene regimen. Thank you for your post!! I was just wondering if you are also using piracetam?

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  18. Hi Anonymous! :) Congratulations on your impending arrival! We do not use piracetam and that is only because when we had asked Dr. Leictman the last time we saw him, he didn't want to start Payton on it too young (I think it was under age 3?) I have wanted to look into it more, but right now I'm interested in focusing on curcumin and I need to do that ... I have read great things about the use of curcumin in kids with DS. Feel free to email me if you have more questions!

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