Down Syndrome and Glyconutrients, eg Mannatech’s Ambrotose.

Books from parents using glyconutrient products have come out from time to time – full of praise and positive testimonial to the curative effect glyconutrients – particularly Mannatech’s Ambrotose – can have on those with Down Syndrome.

Sales reps were claiming the Mannatech’s Ambrotose glyconutrients were a cure for Down Syndrome, and that everyone with Down Syndrome would be vastly improved, if only they used the glyconutrient supplements they were selling.

Unfortunately, Mannatech’s Ambrotose glyconutrients do NOT appear to be the cure and hope for Down Syndrome that many claimed it was.

This page goes into the topic of Down Syndrome and glyconutrients in great depth, to fully explain that this treatment for Down Syndrome, in spite of the lovely testimonials a small number of parents write about Mannatech’s Ambrotose , just does not appear to really work.

Contents: 

SECTION 1:  Are Mannatech’s Ambrotose Glyconutrients really a Down Syndrome Treatment? — Mannatech and it’s sales reps — Reporting Mannatech salesmen to Mannatech — Web sites that also speak about glyconutrient supplementation being ineffective — Class Actions against Mannatech tell us what? — Why the interest in Mannatech’s Ambrotose glyconutrients for kids with Down Syndrome?

SECTION 2:   Now to the book on Mannatech’s Ambrotose glyconutrients and Down Syndrome [Who started the glyconutrient Down Syndrome buzz? — About using Photos as proof that glyconutrients work on those with Down Syndrome — Glyconutrients and accademic progress in those with Down Syndrome – the IQ controversy — Misunderstandings in the book about Down Syndrome and erroneously attributing continued growth in functioning to glyconutrients — What the book does show is what the effect of love and strong support can do to help those with Down Syndrome be part of a normal society — To sum up this book on glyconutrients and Down Syndrome ]

SECTION 3:   Beyond the book — More about Mannatech and glyconutrients and research and Down Syndrome — Restrictions enforced in other countries on Mannatech Ambrotose glyconutrient supplements — Glyconutrients in the USA — More on the research + the dangers of supplementation with glyconutrients — Here is a modified part of one email I wrote to a parent re how people with special needs are preyed upon — More about Down Syndrome glyconutrients salesmen — Concluding remarks on Down Syndrome glyconutrients and their potential benefits and dangers.

Are Glyconutrients really a Down Syndrome Treatment?

Are glyconutrients a Down Syndrome treatment? Some parents are using the Mannatech’s Ambrotose glyconutrients in the belief that glyconutrients can cure their kid of Down Syndrome.

One of the parent’s contacted me directly and others are known to our Down Syndrome Worker. Some are spending about $140 per month on Mannatech’s Ambrotose glyconutrients alone.

However, Mannatech’s Ambrotose glyconutrients appear to have no proven clinically significant practical benefit to those with Down Syndrome that I am aware of.

Mannatech’s Ambrotose glyconutrients came to Australia several years ago with considerable fan fare and lots of promises for better health for everyone.

The doctor whose research supported Mannatech’s Ambrotose glyconutrients at that point in time, was found to be misrepresenting the benefits of Ambrotose glyconutrients and he was also found to be gaining significant monetary benefits from the company and indirectly through his wife being a salesperson for the glyconutrient product.

It was initially claimed, that as a result of special plant sugars ( aka glyconutrients ) being neglected from a person’s diet, that just about any sort of ill health can be linked to glyconutrient inadequacy – cancer, fibromyalgia…

Taking the special Mannatech’s Ambrotose glyconutrients would therefore improve everyone’s health.

Only problem is the body can apparently make these special glyconutrients itself, so I’m at a loss as to why anyone, let alone those with Down Syndrome, are even looking at Mannatech’s Ambrotose glyconutrients as a treatment for Down Syndrome.

Mannatech also states that Ambrotose cannot treat disease. So they also confirm the limitations of their glyconutrient as a treatment.

Mannatech and it’s sales reps

If you peruse the internet you will find that Mannatech dissociates itself from salesmen trying to sell their glyconutrients by making claims about how Ambrotose can heal.

  You will also find that several governments / members of parliment and newspapers have censored Mannatech salesmen for making unsubstantiated claims targeting vulnerable members of the community – especially the sick and dying. Australia and New Zealand are but two examples of where this has happened.

It is important to note that Mannatech states that their products cannot treat disease, so it would be pointless to use it to try and overcome any disease. I make this point clear, as recently, in Australia, a medical doctor used his influence to get a cancer patient to sell Mannatech products as a treatment for cancer. The doctor was barred from practising medicine.  It wasn’t the Mannatech company, nor it’s products, that were at fault, it was the doctor.

However, it does reflect badly on the Mannatech company, that it is allowing such persons to join up with them, apparently unsupervised in the way they deal with customers, they apparently see Mannatech as a quick way to unscrupulous wealth.

Reporting Mannatech salesmen to Mannatech

Mannatech actually wants you to contact them, should any associate / sales rep contact you making out it’s Ambrotose glyconutrients is a treatment for Down Syndrome. USA phone (972) 471-7400 (ask for the Legal Department). Australia: phone (02) 8437-7400.

Mannatech apparently has a policy of stopping such associates from selling their products, not just the glyconutrient one.

 

Some of the information provided here was obtained from the Canberra Fibromyalgia and CFS pages. This web site went into Mannatech’s Ambrotose glyconutrients in much greater detail. I think the picture they painted was pretty clear that Mannatech’s Ambrotose glyconutrients did not appear to work.

There are other reputable websites that have come to this conclusion, including one written by a medical doctor, Dr. Len Leshin, who also has a kid with Down Syndrome.

Incidentally, you can make your own glyconutrients cheaply by going to Australian Dr David Bird’sGlyconutrient Jam and Glyconutrient Powder Recipe: Getting all essential sugars without spending heaps on expensive supplements.

Class Actions against Mannatech tell us what?

Mannatech, the company that produces Ambrotose glyconutrients, has had several CLASS actions filed against it ( groups of people dissatisfied with Mannatech and who are suing Mannatech for compensation, though some might say we should be more concerned with the legal outcomes as to whether any wrong has been done and by whom ) and the company has also stated that their glyconutrients may be unsafe to take (for more information see, for example, National Council Against Health Fraud – their link is further down this page).

Why the interest in glyconutrients for kids with Down Syndrome?

Well, now I know why parents of kids with Down Syndrome are eager for the glyconutrients.

A book called “A Gift Called Michelle” is being distributed with other glyconutrient information here in Australia.

Basically, the book contradicts itself from the very start.

It starts out saying that the information they provide is not intended for diagnosing or treating any condition, but then on page 7, the sales pitch, if people use these products ( glyconutrients ), they too, in the hundreds of thousands, will be improved with a great sense of joy.

What then follows is an account of a kid’s optimised development with Down Syndrome.

 

Now to the book on glyconutrients and Down Syndrome

Who started the glyconutrient Down Syndrome buzz?

Due to the way a newspaper reporter interpreted the development of her Down Syndrome facial features as obviously being an unnatural occurrence, glyconutrients were declared – without proof – to be the cause.

Yes, the before and after photo’s show a much less Down Syndrome characterised face, but the change can also be because she entered puberty ( which I think is the most likely going on her appearance ), lost weight from her face, the pointy teeth, which are common with Down Syndrome, are being covered – so she is smiling differently, with the top teeth now sitting lower and in front of the bottom teeth.

The lighting angles between the photo’s may have changed going on the shadows etc.

 

About using Photos as proof that glyconutrients work on those with Down Syndrome

Also, if you look very closely at the picture of Michelle with her mother, as well as the picture of Michelle with her mother and father and two dogs – Michelle appears to be several years older in these pictures – to me, the characteristics of Down Syndrome seem to be more obvious than in the earlier picture presented to us as evidence of a miraculous cure.

I’d show the pictures here, but they would be under copyright.

My opinion is based on using the Down Syndrome Characteristics as a guide when I looked at the photos. Doing so effectively removed the unrelated cosmetic changes such as eye brow plucking, hair styling, etc, which can drastically alter the appearance of a person.

To make my self clear, from what I can see, the glyconutrients failed to remove the appearance of Down Syndrome.

Let me also make something quite clear, people with Down Syndrome can look quite beautiful.

When I talk about Down Syndrome appearance, I am referring to the distinct physical features that the genetics typically gives rise to in a person with Down Syndrome, whether they are beautiful or not.

Jacob, my son, looks handsome, Michelle looks beautiful, they both have Down Syndrome.

The problem of using photos to show improvements in Down Syndrome appearance.

As you can see, there are times when Jacob’s appearance looks very normal and much rarer times when he looks very Down Syndrome like.

Photo’s should not be considered proof of a Down Syndrome treatment, such as glyconutrients.

I would also add, that I could take photos of kids without Down Syndrome who would “look Down Syndrome” at certain times as well.

Hence the need to judge any claimed improvements against the benchmark of Down Syndrome characteristics – which are the genuine Down Syndrome characteristics.

 

Glyconutrients and accademic progress in those with Down Syndrome – the IQ controversy

Now to the next main issue: The academic progress which is given much attention, is very difficult to follow in the booklet.

One gains the distinct impression Michelle is academically in the genius range of abilities – with straight A marks that got her onto the “Straight A Honor Roll” in Middle School, yet her middle school report of that time states that academic deficits continue to exist and that she will require ongoing special educational services.

In freshman year high school, Michelle had one to one focused academic tuition from her mother every day after school, she had an aid to help her with her work in the classrooms and again came up with straight A’s, supposedly in regular academic classes.

Of course, if glyconutrients could make us into geniuses, we would know about it through the mass media by now. The news would travel faster than lightning. So obviously something else is going on here.

We find out from the booklet, that in grade 9, when she was 15 years old, Michelle’s reading level was two years behind ( which is remarkably good for someone with Down Syndrome ), with comprehension around that mark as well ( which is also remarkably good for someone with Down Syndrome ), that she learns things slowly, still didn’t understand stranger danger and was acknowledged by her mother as mentally retarded.

So, what we can now say is that her straight A’s in normal freshman academic classrooms, did not equate to her intellectual abilities in comparison to her peers – other 15 year old students. It appears for something like, doing the best she can at her level of functioning.

 

Misunderstandings in the book about Down Syndrome and erroneously attributing continued growth in functioning to glyconutrients.

I also pick up on other things going on in this booklet. For example, it mentions Michelle continues to improve even though, based on professionals and teachers, Michelle should have leveled out at the six or seven year old level of functioning.

If you have read my other web pages, you would know that this is just not true, kids with Down Syndrome continue to develop even into their young adult years.

So any attempt to claim that glyconutrients achieved miraculous things for this kid is, in my opinion, highly dubious – appears to be wrong.

 

What the book does show is what the effect of love and strong support can do to help those with Down Syndrome be part of a normal society.

What we have is a kid that has wonderful and dedicated parents that spend masses of time with their only kid – providing her with a very enriched and supportive environment, showing us, that just maybe, we can make a difference with our kids by being very supportive and by fully utilising specialphysiotherapy services etc from a very young age.

A note on this, Michelle had access to special intervention five days a week, in Australia, we could only get about two hours or so per month for Jacob – the speech therapy department refused to get involved when initially approached and we had to wait for Jacob to be old enough for them to see him – which from the internet, we know was just too long.

 

To sum up this book on glyconutrients and Down Syndrome

Anyway, as a factual document of the effectiveness of glyconutrients as a treatment for Down Syndrome, the book titled “A Gift Called Michelle” falls far short of the mark for proving the point.

However, there is apparently some health advantages being claimed by pro-glyconutrient interventionists, claiming that Michelle was seriously ill with a number of physical complaints, which went away after the Mannatech glyconutirents were introduced into her diet.

I don’t see how the Mannatech glyconutrients could achieve this, neither does Mannatech presumably.

Obviously I am sceptical after all the smoke discussed above, but, perhaps, the Mannatech  glyconutrients – aka ambrotose – may have had some benefit for Michelle at a health level.

If anyone can share more light on Ambrotose glyconutrients in this regard, please contact me with the factual material or link to same.

 

More about Mannatech and glyconutrients and research and Down Syndrome

This article about Mannatech from the National Council against Health Fraud has more information about the firm’s practices and promoters.

I decided recently (2005) to research the research on glyconutrients, just to see if anything more favorable was forthcoming. None of the reputable publications, such as the Journal of the American Medical Association, had much to say on the topic. Meaning there was very little, if any, quality medical research looking at glyconutrient supplementation.

In desperation, I tried going to mannabody, which supposedly had heaps of research listed. The site appeared to be current, as it had a copyright 2005 tag.

However, even on this very pro Mannatech Ambrotose glyconutrients web site, there was little recent research. In fact, most of it was one to two decades old.

With the few research reports I checked out, I found none really told me that Mannatech’s Ambrotose glyconutrients were beneficial – the quality of the research also appeared questionable. A big, big disappointment.

However, I did find a disclaimer on the web site – if you look at the tiny print at the bottom of the page and click on it, you can find it too. Here is what I found: Glyconutritients are unsuitable for the treatment of disease.

I went to the Mannatech site and found a similar disclaimer. I also found the research to be basically old, with the documentation they provide appearing to fail to show any value of their glyconutrient supplement.

It was also clear that mannabody was much of the time directing the reader to the research on Mannatech’s site.

 

Restrictions enforced in other countries on glyconutrient supplements

On the Mannatech site I also found that some, if not all, their research reports / reviews were not allowed to be used in informing potential customers in the following countries, as the articles apparently were considered to be of extremely poor quality etc: Korea, New Zealand, United Kingdom, Canada, Australia and Japan.

Strict guidelines were enforced in Taiwan as well as to how they could sell their products, such as Ambrotose.

 

Glyconutrients in the USA

For the United States, Mannatech openly states that they are taking responsible advantage of the Dietary Supplement Health and Education Act of 1994 (DSHEA). Which essentially means they can sell you the product without it having any demonstrated benefit.

They don’t have to prove the glyconutrient product is any good – in fact, it could be absolute rubbish or absolutely brilliant – the onus is essentially on the buyer to beware.

Most alternative medicine products I suspect, herbal for example, sell under the DSHEA guidelines.

By the way, for Down Syndrome, I found nothing supporting Mannatech’s Ambrotose glyconutrients as a Down Syndrome treatment on the Mannatech web site.  Manntech is NOT making these claims as far as I am aware.

 

More on the research + the dangers of supplementation with glyconutrients:

OK, you may say, no recent research, but just look at all those old research reports stating how beneficial glyconutrients are.

No doubt about it, glyconutrients are important to our body, but that does not mean our body needs extra supplementation of them.

Secondly, one would need documented proof that the glyconutrients taken as a supplement actually does anything which is clinically and statisitically significant.

Thirdly, just because our body depends on a substance does NOT make that substance safe for us to take as a supplement. Selenium supplementation is known to be extremely dangerous and should only occur under medical guidance, yet selenium is vital to our body’s existence.

Likewise, taking glyconutrients, which is just the same as taking a sugar supplement, could be quite dangerous to those tending to obesity, diabetes type 2, metabolic syndrome aka syndrome X, dementia, high cholesterol and all manner of ailments where sugar is considered dangerous.

In fact, according to the National Council Against Health Fraud, Mannatech was openly informing potential investors that their products, such as Ambrotose, may be dangerous as a supplement.

 

Here is a modified part of one email I wrote to a parent re how people with special needs are preyed upon:

“Dear …,

… We would do anything that would help Jacob.  I don’t tote this line or that line, but I have become aware that we are preyed upon by so many unscrupulous people.  It is sad…

Also, Jacob turned four in January, he has also shown marked developmental improvement, yet he is on only very minimal TNI now and very little piracetam now.  Our kids go through developmental spurts and we forget this.  Interestingly I had a parent contact us before Jacob went onto Piracetam and she told me that Jacob at around six or so months of age would go through a developmental spurt and that I shouldn’t worry too much by his poor progress.  Well, we put the six month or so development spurt down to the piracetam and wanted desperately to believe we were able to change Jacob’s developmental outcome, but I never could forget her email and now I realise it was more likely just Jacob growing up.  Interestingly, the ‘official’ start date for using the piracetam was moved from starting at birth to starting at six months age. Why? because no benefit appeared to show from using piracetam from birth. So now the piracetam start date coincides with the expected developmental spurt.

We will shortly be starting Jacob on vinpocetine, which is suppose to aid in memory and learning and recollection.  We went to a paediatric specialist in DS and asked him and he looked into it and said it should be safe with Jacob, but he didn’t know if it would really help – essentially if there is no dramatic improvement, we should discontinue the drug – the drug is not toted by doctors over here for cognitive enhancement, but it is toted by a lot of people trying to sell it to us.

By the way, my wife suffers from several debilitating forms of arthritis, including fybromyalgia, we are desperate to find a cure  for the fybromyalgia.  One guy has an internet store and claims to have a cure that he patented so no one else can sell it to us, his internet price is about $1000 an ounce, more costly than gold!

In our schools our kids are taught about the internet and they are also taught about how people prey on others on the internet – for money, for sex….  There are always sweet talking con men to prey on people like us who are desperate for help.  The money you spend on Mannatech’s Ambrotose glyconutrients or anything else is coming out of your kids’s pockets, as it is less money that they will inherit and less money they will have to buy the more promising drugs that are being worked on.  But it is your decision, just like the vinpocetine is our decision for the next hope for Jacob.

All the best and let us know how things work out.

God bless, Donald.  PS after spending so long writing this response, I think I’ll add it to my web site, as it has helped me to put into words what I know in my heart. ”

More about Down Syndrome glyconutrients salesmen

A word of warning, you may get some unreasonable people, I know I have, who will argue with you about glyconutrients, but not provide adequate proof or provide only half truths or use poor research, as a university trained researcher myself, all I can say is that you really need to be alert, do your own research, consult doctors you trust and believe in.

One apparently pro-glyconutrient proponent literally came to my door and said that proper scientific proof that glyconutrient supplementation worked was unnecessary, stated a psychiatrist said the same thing – this is fine if you are talking about the Dietary Supplement Health and Education Act of 1994 (DSHEA) which is explained above, but if you are talking about using glyconutrients as a treatment / cure for Down Syndrome or any other condition or disease, then, yes, proper proof should be sought – along with an explanation as to what the bad side effects are.

 

Concluding remarks on Down Syndrome glyconutrients and their potential benefits and dangers.

Having said all that, I would also add that I personally have not used glyconutrients, nor do I know of any specific research that evaluated glyconutrients on those with Down Syndrome.

However, this lack of research is a two edged sword; it is possible glyconutrients may help or do nothing, that glyconutrients may also be found to be harmful to a developing baby/kid with Down Syndrome in some way – given that persons with Down Syndrome tend to obesity, giving them added sugar appears irresponsible and dangerous.

So if you have some concrete research about glyconutrients, that I don’t know of yet, please inform me.

In case you don’t know, glyconutrients are the basis of energy transfer in the body. Simple ordinary table sugar is a glyconutrient, as is glucose.

Taken in a large enough dose, like drinking a can of soft drink, glyconutrients will enhance memory and so on, but consuming glyconutrients in the quantity needed to maintain the advantages is extremely questionable and for most people with Down Syndrome, may possibly add to their health problems.

Lets face it, for many of us, our kids with Down Syndrome get plenty of sugar, glyconutrients in their diet already from different sources. Yoghurts, fruit, cereals, seeds, sugar cane … It’s NOT like they existed in a state of glyconutrient deprivation.

Given that the human body is apparently able to process sugar into any of the special sugars ( special glyconutrients ) it requires, adding more glyconutrients as a supplement seems highly questionable.

Again, if you know of any quality research that disagrees with any of this, please let me know about it.

Further, from what I can gather, if there are any gains, they so far appear to be small and of questionable value – If glyconutrients helped our kids with Down Syndrome in a big way, it would have resounded around the world long before this I think, don’t you?