What is an Alternate Therapy?

Definition: Alternate (in medicine): not conventional. (i.e. controversial)
Therapy: curing, treatment

Conventional medicine was very controversial just a few years ago.

Not Conventional or Controversial?
Alternate therapies which claim amazing cures or amazing health improvements can be very controversial. TNI (for example) has been very controversial therapy for Down's syndrome because there have been claims of normal intelligence, normal growth, more normal facial features. No scientific basis could explain why a mixture of 50 vitamins, mineral, amino acids, and digestive enzymes should result in these improvements. Parents arguing for and against TNI have made this controversy all the more evident. As yet, no randomized, placebo controlled, double blind trial has ever been conducted to test TNI. Yet this therapy can still have merit. Since there are so few alternatives it makes sense to investigate why any therapy like this might be effective. If only one ingredient out of 50 in the TNI is helpful, doctors, scientists, and parents would want to know which ingredient that is.
We (the DSRF) initiated a review of all published research to look into these issues, the report can be found on our website. (Click here to read that report). As a result of that review we discovered there was a good possibility that antioxidants and folinic should be helpful for our children. We believe just a few ingredients in the TNI may account for any improvements. The rest of the ingredients are probably not needed if the child has a healthy diet. It took 8 years to get from the point where TNI was first discussed and promoted on TV, to today, when we have a £500,000 research project underway to test Antioxidants and Folinic. These 8 years have been very difficult because the weight and the force of established medical opinion was aligned against us. Even today there are doctors who suspect we may be right yet are afraid to say this openly. Advances in medicine are hard won and they are challenged from start to finish. Every new hypothesis (theory) is challenged and if it survives the challenge it becomes accepted medical practice. Here are a few examples of hard won advances in medicine.

Doctors washing their hands. Anaesthetics and painkillers
There was a time when doctors ridiculed the theory that invisible germs actually existed. Any doctor who proposed such ideas was very controversial. There was also a time when doctors (and the church) thought anaesthesia unnecessary. Pain was something from God that we had to endure. A surgeons skills were rated in terms of how fast they could saw off a leg and yet the patient survive. Doctors washed their hands to remove the blood after an operation. They did not wash their hands before an operation and did not wear gloves. Patients who survived the shock of an operation usually died of infections after the operation. Hospitals were dirty places where your chance of survival took a dive when you went into these places.

Hygienic Hospitals
There was a time when hygienic hospitals were revolutionary. The Victorian period was when most of our hospitals were built in the UK and many of these hospitals are still in use today. By this time doctors did understand germs and the need for cleanliness and they had started to wash down the operating theatres to get rid of germs. They also washed their hands and started to wear gloves and masks. This revolution in medicine was regarded with suspicion by many doctors and it was controversial until it was seen to work and the patient's survival rates greatly improved. It has been estimated that the failure of doctors and nurses to wash their hands properly is a leading cause of the spread of killer diseases in modern hospitals. Notices are in most hospitals telling doctors and nurses exactly how to wash their hands. Its not supposed to be a quick rinse under the cold tap.

Medicines that work and don't harm the patient.
Even with the dawn of hygienic hospitals, medicines were either placebos or they were untested and 90% were estimated to be totally useless. The doctors job was to help the patient's own body to cure itself. (or they died). This is still true today, but we have some medicines that actually work and are helpful in fighting disease and illness. Today about 50% of medicines prescribed for an illness are either ineffective, wrongly prescribed, or not needed. And doctors often don't know which 50% is effective. Among these are many antibiotics which are no longer effective. Diseases thought to be eradicated are now re-emerging including TB. And there are new diseases more terrible than anything seen in the past. As if that were not bad enough we have saved examples of the worst diseases like Smallpox and Anthrax . These have being developed as Weapons of War to wipe out whole nations of people. We don't know how to cure these diseases in our own populations. Medical practitioners have always known how to kill people. The father of modern medicine was Hippocrates (460AD), he saw the bad practices used by experts in poisons who were the doctors in his time. He required them to swear an oath to a higher moral code, not to hurt the patient and not to do abortions. Today there are doctors who do both. Hippocrates would have refused them a medical degree. What we need is good medicine and good ethical doctors.

Evidence Based Medicine
In 1960 there was a drug widely prescribed by doctors called Thalidomide used for Morning Sickness. Thousands of pregnant moms were given this drug and my wife was offered that drug. She very wisely decided to take no medicines or alcohol during her pregnancy. Then came the stories of babies born without arms and legs. For a long time there was a refusal to believe that doctors were to blame for this disaster. But doctors were to blame and they had prescribed a very dangerous drug to thousands of pregnant mothers and as a result there were thousands of babies born without arms and legs. As a direct result of this disaster we now have much more demanding testing of drugs. Before a drug is tested it has to get ethics approval from a team of ordinary people to be tested. Evidence Based Medicine just means there is evidence to indicate the drug should be effective and it will not be harmful, then it can be tested in a very rigorous manner using a randomized, placebo controlled double blind trial. This is what they now call the "Gold Standard" for Evidence Based Medicine.

Environmental Factors effecting Health & Lifespan
With much better communications it has become possible to investigate environmental factors effecting health & lifespan. Researchers have wondered why some diseases are more common in some countries than they are in other countries. They could also see that when people moved from one part of the world to another part of the world they had health profiles like those who lived in that same part of the world. So this ruled out the possibility that genetics was the reason for the health and survival differences. There had to be a link to the way they lived their lives in those countries. Diet was the most likely difference hence diet has been a subject for debate and research for the past 50 years. Nutritional therapies are simply a development from this line of research.

Nutritional therapies
Diet has a big influence on health and lifespan regardless of genetic inheritance, but genetics is now seen to have an influence. Research for the past 50 years has looked at the way the body works this is called the metabolism. Hundreds of books have been written, for the most part these books discuss ideas, that are theories because they are very difficult to prove, and developing proof is very expensive. That "Gold Standard" for evidence based medicine applies to all research including research that investigates nutrition. Health food stores have created an industry to supply vitamins and minerals and amino acids. All of these are in everyday foods anyway and in food they are in a complex ratio that suits the needs of our body. It is not at all clear that taking individual vitamins or minerals or amino acids as a medicinal prescription can ever be as effective as modifying the diet to get a higher amount of that substance from eating a different food. We can be pretty sure its better to eat a different food, so this is the safest choice the best choice and its the least expensive. No proof of this however apart from the minor detail that we are more healthy and we do live longer. This kind of evidence is accepted as convincing where drugs have never been properly tested but continue to be used because there was no harm and there seems to be a benefit. On that basis Health food stores do a roaring trade as we all try to understand the latest nutritional information.

Gene therapies
With the mapping of the human genome researchers are investigating how the body works at a cellular level. How the genes control our lives at this most elementary and fundamental level. They can look at patients with diseases like Parkinson's and compare the genes from two brothers one who has the disease and the other who does not. They can study the whole family for several generations and find the exact differences in the genome. On this basis they discovered a difference in patients with Parkinson's. They thought Coenzyme Q10 was not functioning properly in these patients so a trial was conducted to test various doses of coenzyme Q10. They discovered all of the patients had some benefit and those patients getting the biggest dose of Coenzyme had the most benefit in slowing the progress of this disease. Unfortunately by the time a patient is told they have this disease there is already serious brain damage. But if families with the gene that predisposes for Parkinson's were to use this information they may all end up taking the Coenzyme Q10 to prevent the onset of the disease. Very new research but very important because coenzyme Q10 is in food and it is available in health food stores and it is a nutritional therapy. The DSRF has a big research project underway to test Antioxidants and Folinic acid therapy. This therapy was developed based on supporting evidence from in-vitro research on living cells and on an understanding of the genetic differences in children with Trisomy 21. Logically our therapy should be helpful but it needs to be tested to show proof that there is a benefit and no contraindications. This line of research is very similar to the Parkinson's research in that our therapy has been targeted on a disease that is caused by a genetic dysfunction.

Being open minded
In AD 460 at the dawn of "Modern Medicine" The doctors book of medicines proclaimed "Each medicine has a 'Charm' which you must repeat over the patient. If you give the medicine without saying the charm, the medicine will not work. If you say the charm without giving the medicine the charm will not work. You must give the medicine and say the charm." Belief in the doctors magical abilities to cure every illness has persisted for over two millennia. We all trust our doctor with our lives. And we take medicines without understanding how they work or what iatrogenic effects (bad side effects) there are for some of these medicines. And there are always some bad side effects with medicines this is how they determine the maximum safe dose rate. Evidence based medicine provides the opportunity to develop new therapies based upon the latest technology and the latest information. Each new development is an unconventional (alternate) therapy until it is scientifically shown to work or accepted as good practice. There will be detractors who cling to the past and refer to alternate therapies as if these are somehow less significant or worthless. In fact they are not, and they are just part of the way good medicine finds its way forward. Those therapies that are found to be effective in a controlled clinical trial will remain and those that are ineffective are discarded. It's the only way to make progress in medicine.

A Final Comment and a Warning
The DSRF was formed to get research underway to help children born with Trisomy 21 and to improve their growth and development. We do this by investigating the claims of any therapy that is said to be beneficial. Then we prepare a research project to test a therapy that has a good scientific basis for potentially being of benefit. Then we have to find funding and a research team to get the project underway. Finally, we help that team to find participants. Eventually we hope to have our own Healthcare & Resource Centre where we can provide expert care and information to all parents of children with Trisomy 21. We help parents obtain the latest information on good medical practice and we provide information on the alternate therapies which may be helpful. We also advocate that parents work with their doctor if they decide to use any alternate therapy. As already stated the nature of an alternate therapy is that this is unproven technology and not all new therapies are good therapies (or even useful). Some can be very dangerous and very harmful.

Our children do have a higher incidence of health problems that require immediate and urgent healthcare such as heart problems, upper respiratory distress, and leukaemia.

Don't delay if there is a health problem, talk to your doctor.

Peter Elliott