Are Megavitamins the same as TNI?

From the above information in our chart it can be clearly seen that Megavitamin therapy is very different from Targeted Nutritional Intervention. Only 16 0f the 50 ingredients in TNI are present in the Harrel Megavitamins formulation there are no Amino Acids in the Harrel formula. Folic acid therapy has been advocated for Down’s syndrome but 400 mcg is a low dose rate and may only be effective if the need were very critical.

Megavitamins generally means a dose rate of 10 to 20 times the RDA.

In the case of Down’s syndrome any reference to Megavitamins is usually a reference to the formula prepared by Dr Ruth Harrel. Most of those dose rates are very high. Some dose rates would today be considered potentially dangerous.

Any reference to trials of megavitamins and Down's syndrome were short term trials. No long term trials have ever been ran. Improvements in IQ, were claimed for the Harrel study but could not be duplicated by other researchers.

All of those studies were of very poor quality with small groups of participants and often of various ages, various disabilities, all participants did not have Down’s syndrome and none of the trials considered health improvements an issue. In medical terms the outcome of these studies are uniformly inconclusive. To say they are evidence one way or the other is to clutch at straws to support your argument. Most researchers would recognize that these studies have produced a type of error which results in no useful follow on research.

We commissioned a systematic review of research and have already developed a body of evidence that supports the need for a high quality double blind trial. A protocol document for a study has been drawn up and it is for a long term RDB Clinical trial. There will be 200 participants in the project will last three to four years. The study will monitor health and development and as many other issues in Down's syndrome as we can fund.

For the moment those parents who use nutritional intervention have the evidence of improvement in their children. Primarily this is in terms of improved health. Our project will use intervention because there is related scientific studies which strongly supports the use of antioxidant therapy to negate the consequences of free radical activity which is linked to cell damage. In Down's syndrome we know there are elevated peroxide levels and these can be seen in the blood. (Get your doctor to run blood tests). Those peroxides are harmful and they get there as a result of a 50% over production of Superoxide Dismutase which is produced by a trisomy of genes in the 21st chromosome.

We know that the body will try to increase the natural production of antioxidants, but this is now known to be an inadequate response and additional dietary antioxidants are needed. Eating a lot of fresh fruit and raw vegetables is always a good idea but most children will not eat a lot of vegetables and these are usually cooked and have a reduced vitamin content, they wont eat 5 or 10 oranges and apples a day and nature did not intend that they should. Trisomy 21 is an abnormal condition and our response has to be something in excess of what is normal. Vitamin supplements are logical but we need to know which are the most effective and what the correct dose rate is for each person. This is why we need more research.

Trisomy 21 is a medical problem. It needs a medical solution, an antioxidant therapy is the best and most inexpensive solution based on our current limited knowledge. TNI is the work of scientists who care about our children, they developed their formula based on their analysis of the needs of our children, it is a complex formulation. They know there is a need for more research but they also know the damage is progressive and if parents want to do something to help their child they will have to do it now. This concern has resulted in considerable pressure on parents to use TNI, however many parents cant afford TNI even when they want to use it.

ANTIOXIDANTS RESEARCH:

So in answer to the above problem and in order to get the support of the medical profession we have initiated research to investigate the less expensive core ingredients of TNI which are the antioxidants and those ingredients which help the body to supply more antioxidants. This is a very logical and sound strategy. If we succeed millions of parents throughout the world will for the first time in history have a treatment therapy for their child. The adults with Down's syndrome who are now full grown and unable to benefit from improved growth and more normal development can still benefit from reduced cell damage, improved health, and a therapy that has the potential to prevent brain injury and dementia which we know is a very serious medical problem for this adults. with Down's syndrome will also benefit from that same inexpensive therapy.

TNI RESEARCH:

TNI may be a better therapy but it will need a lot of testing to prove that it is significantly more effective than the core ingredients which are essentially antioxidants. An antioxidant therapy is very safe and it is on the right track. After we have proof that this therapy works we can move on to testing the other ingredients in TNI. Or perhaps another research team will do this work in the USA in next few years. None of this stops parents talking to other parents and deciding to use TNI but they should monitor the health and the growth rate of their child and get the support of their doctor.

WHAT SHOULD DOCTORS ENDORSE?

Scientific evidence has shown that in Down syndrome the peroxide levels are elevated, this results in increased oxidative stress and lipid peroxidation we know this will cause cell damage because the cell membranes are made of lipids and the brain is most at risk because the brain is 60% lipids. There is evidence sufficient that most doctors would give their own child antioxidants if the had Down syndrome. Evidence continues to emerge DNA Damage markers are significantly elevated in Down syndrome (Jovanovic 1998).

There is NO DOUBT that the brain is the most at risk, there is a mountain of evidence of progressive brain injury, there is post mortum evidence of brain damage in plaque formations which are always seen as a precursor to dementia and they are there 20 and 30 years earlier in our children. Anyone who claims to have a concern for children and adults who have Down's syndrome should be reviewing that evidence and endorsing an antioxidant therapy now. Antioxidants are not drugs so there is no profit to be made by drug companies and not much possibility of trials being funded by drug companies to test this therapy. The DSRF is initiating research but thousands of doctors can decide what is best for their patient and advocate a useful antioxidant therapy that is very safe.

MEDICAL RESEARCH INFORMATION PACK.

We can provide a medical research information pack with copies of research papers and a confidential copy of the protocol document for the proposed RDB Trial of an Antioxidant Therapy to Ameliorate the Pathology of Down's Syndrome. Send a £20.00 donation for research with your request for this information.

A MIRACLE CURE ?

None of these therapies are claimed to be a "Miracle Cure" for Down's syndrome and this should not be the expectation. Neither should there be an expectation of an immediate improvement, it is reasonable to expect any therapy to take six to 12 months to show a significant and noticeable improvement especially to the growth velocity. The biggest gains on growth will occur the younger the child is, this is when growth velocities are at a maximum especially for the brain. These therapies are also about preventing degeneration and premature aging which is a very long term strategy. But injury to the brain is seen in teenagers and young people in their 20's and 30's so it is important to find a therapy that will provide a benefit on a life long basis. Where there is a critical need or deficiency an immediate improvement may be seen in the patient and parents often report this kind of response if their child has persistent health

PROVIDE SUPPORT FOR RESEARCH ---- OR IT WILL NOT HAPPEN.

Our Website. is free but hundreds of hours of work go into keeping it up to date. It is the best Website. for thousands of new parents. They learn about important research issues and those parents can then start to use an antioxidant therapy to help their child. Hundreds of them will phone us or send emails asking for more information or send letters. Very few will even send a stamp to cover the cost to send them this information. Perhaps they think we are rich or perhaps government funded but we are neither. We respond and we ask for their financial support for research, 95% will give no support at all. If you are among that 95%, remember there is no such thing as a free ride. Someone always has to pay. So please think about your child's future and dont be stingy. I'm a parent and I know parents are being stingy. They are spending more on sweets and ice cream each year than they do on medical research to help their child. Thats a very big mistake. We can raise millions for medical research but first we must hire a team of professionals to ask for that money. This is a full time job these people are not parents and they do not work for nothing. So get serious about research and help out.

If you are cynical and wonder what I get out of running this organization? The answer is zero. I pay the phone bills, I organize conferences and fundraising activities that have raise thousands of pounds and because I am retired I donate most of every day to do research activity and fundraising to get research underway. If I sound a bit fed up, its because so many parents want such a lot, but are unwilling to do anything to help with research. Some parents have the nerve to phone me to complain that there has been no research. Then they will also ask for information and promise to support the research effort by joining the DSRF and becoming a supporting member. Very few of them will. Talk is cheap and action falls by the wayside. It takes guts and determination to change the future and some sacrifice!

Click here to join the DSRF and don't forget to make a financial commitment.

IN SUMMARY:

Any therapy that prevents cell damage and brain degeneration will IMPROVE the outcome for children and adults with Down's syndrome and this is a very worthwhile objective. It will have a dramatic benefit for newborns and for very young children, but also for everyone else who has Down's syndrome regardless of their age. Dont forget 40% will get Alzheimer's and most will have signs of dementia due to the brain injury as they get older.

If you want the medical profession to prescribe this therapy for your child now and as they get old. Perhaps when he or she is in care or in sheltered housing and they cant fend for themselves, and you are unable to care for them. You will have to support medical research NOW. Its no use waiting because then it will be TOO LATE!

Peter Elliott

Click here for a short history of Nutritional Intervention >>