Saturday, October 8, 2011

31 for 21: Thoughts on Using Nutrivene

A couple weeks ago someone (an anonymous person) left a comment on this blog post.

I saw their comment and hesitated publishing it, but I thought it would be worthy of addressing. So, to the anonymous person who left this comment, I hope this helps clears some things up.

My wife and I tried Nutrivene for quite a few years with our daughter with Ds. We used to visit with Dr Leichtman and would use the Nutrivene religiously. However, we had to take her off of the Nutrivene due to her being diagnosed through Stanford with Kawasaki disease. After being off of the Nutrivene, we see that all of her blood tests come back looking the same, except not so much elevation in excessive vitamin levels. Her growth still remains normal and she is progressing in leaps and bounds due to working with her daily at home and given speech therapy. She is mainstreamed in a 1st grade class with no aid. She's doing great! We were warned by most of our Dr's that it might not be beneficial and may be even harmful to her with those levels of vitamins, but we still tried it for quite a while. After doing more research, it looks like the medical community is on the same page with those Dr's, but those with an interest in Nurtivene and similar supplements still sing their praises. I'm not saying to stop using it, but do some unbiased homework if you are thinking of putting your child on any supplement and make an informed decision from your own research.
I have a few comments to make on this and I will list them all out here.

First off, I'm sorry to see the little girl had to be taken off of Nutrivene and I'm sorry to see she was diagnosed with Kawasaki Disease.

What I really want to address though is some of the statements regarding Nutrivene.

This little girl may very well have okay blood levels right now and may be progressing great right at the moment. But, what a lot of people don't seem to understand, is that the "bad effects" of the extra 21st chromosome in Down syndrome, causes problems which are mainly seen down the road in the teen-adult years. So, while the child may be doing well in her childhood years, she is very likely to have a lot of problems as she gets older. Or, if anything, early onset Alzheimer's.

The way I view it is, that research shows what bad processes, overexpressions, nutrient lacks, etc, the additional chromosome causes. So, I am going to do all I can to try to combat the problems that are present in the body of a person with Down syndrome. I am going to give something like Nutrivene to my brother in the hopes that he will not get early onset Alzheimer's, leukemia, dementia, excessive neuronal loss, etc. I can't reverse all the bad processes that the extra chromosome causes, but I am going to "target" the areas that research has shown can be targeted.

It's no surprise to me that the person who left this comment was warned by most of their doctors not to give Nutrivene. That shouldn't be a surprise. The general medical establishment does not believe that something like targeted nutritional intervention will do any good for someone with DS. The question I ask to that is, why do you recommend a multivitamin that is targeted for the general population? Why is it so unfathomable to have a multivitamin (which is all that Nutrivene is) that is targeted for the population with Down syndrome? It shouldn't be any big deal, but it is to many doctors and I don't get why. After all, people with DS have a very different genetic make up than the general population and therefore have different needs. There is research to show that vitamins are good for the general population, so why not look at the research which shows that certain or extra vitamins are good for the population with Down syndrome.

Another statement this person said in their comment was that something like Nutrivene "may be even harmful to her with those levels of vitamins." I've heard this statement a lot over the years. But, I have not seen one single bit of evidence to show that the dosages of vitamins in Nutrivene (or MSB Plus, etc) could cause any damage. If these levels of vitamins were so harmful, there would be more reports about it. But, the truth of the matter is, there are thousands of families using targeted nutritional intervention with their child with lots of success. If someone has proof of the supposed "harmfulness" of Nutrivene, I'd be glad to see it. Thus far, I have not seen anything, other than people saying their doctor told them it may be harmful.

Another thing that I wanted to make very clear from this commenter, was the statement where they say "...those with an interest in Nurtivene and similar supplements still sing their praises." Quite frankly, I was shocked by that statement. This person claims to have done research, but I must say, they did not do very good research. To say that those who have an "interest" in Nutrivene are the ones promoting it, is bogus. Dr. Leichtman does not benefit from any sales of Nutrivene. My family does not receive anything from Nutrivene, International Nutrition, etc to encourage us to promote TNI. Nutrivene does not do any affiliate programs, so from what I know, there is no one who is being "paid-off" (for lack of a better term) by Nutrivene to promote TNI.

We use TNI and encourage others to use it, because I know it works. I know what research shows and I don't want my brother to become another statistic. Out of love for my brother, and other individuals with Down syndrome, I encourage the use of TNI. Dr. Leichtman promotes TNI, because he has seen the tremendous benefits it gives to people with DS.

I agree that people who are looking into using Nutrivene or any TNI, should do research and do their homework. Look at both sides of the issue - those who are against it and those who promote it. But, do so with open eyes. Look at the research and what it shows. Look at the thousands of people who are using TNI with amazing results. What do you have to lose (except dollars)? You have the potential to gain a lot, because of the help it may give your child. That's the conclusion we came to when we first started using Nutrivene. And I am so thankful that we tried it, because it changed O's life.

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Liora said...

hi, Q

About the Kawasaki Disease, this family may have grounds for legal action.

I assume this child got all the Rotavirus vaccines- not sure if it was Rotateq or Rotarix at that time- but no matter, I'm sure they were never given "informed consent" . This is a legal requirement that a patient be told the benefits AND RISKS of a medical procedure, drug, or medicine like a vaccine.

All Parents ethically and legally need to be told there is a DOUBLING of the rate of Kawasaki disease for those vaccinated with Rotarix, and FIVE times higher incidence rate for those who receive Rotateq vaccine compared to placebo recipients.

This "side effect" is listed in the package insert of both vaccines.

Because unlike most "post marketing surveillance" side effects, which the manufacturers like to try to deny, this one was found during their "safety studies" with even small numbers of kids, the effect was/is so pronounced. That's how bad it is.

P.S. When I called the pharmacy to ask what kind they use, they say that BJU does not offer the Rotavirus vaccine anymore, by the way.

Here is the "patient information" for each of the two Rotavirus vaccines, which is supposed to be given to parents.

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