Do No Harm

The American Medical Association, most National Down Syndrome Associations, and many "specialists" agree. Natural vitamin / antioxidant / enzyme / nutritional therapy is a waste of time and money. Their carefully designed clinical studies proved these supplements do nothing. I'm sure you have heard the arguments and debates on the merits of each side. When Lucas was 1 month old, I did. I read a book by Kent MacLeod Vitamin Therapy and Down Syndrome and I was fascinated.

I tried to marry my list of potential health problems with the overriding premise of "Do no harm" and the commonly accepted, endorsed methods by the AMA and APA. Chronic infection? Antibiotics, sometimes taken daily as a form of "maintenance therapy." Chronic breathing problems? Steroids. Problems with attention? Any array of drugs used to "balance out" the brain's chemicals. Thyroid dysfunction? Synthetic hormone. The list goes on and on.

I started to get angry. I was being told about the likely health complications of trisomy 21 and the acceptable answer was drugs that have proven side effects and drugs that have proven to make immune systems weaker and more dependent? I thought the goal was wellness, a term I have yet to hear applied to children with Trisomy 21 from any specialist. And when valid and impressive research goes into natural methods, we who opt for that route are made to feel like foolish and desperate parents who are in denial.

Here is what I know. The scientific community has tried to study the effects of nutritive therapy methods only to have their study produce no statistical significance. Their diligent methods devised to measure each capability pre and post therapy proved nothing. So while the medical and scientific communities were out trying to convince people that this is nothing more than quackery, the real specialists in the group quietly "published" their results. Interestingly enough, when the study ended the parents of the children who received the supplements refused to stop them.

I am not going to give scientific pros and cons in this blog. There are many sources out there for you to find if you've not done so already. The bottom line is that outside of the surgical intervention to correct heart defects, the established medical practices have done very little to improve our children's health. Instead they opt to respond to illness, respond to infection, respond to alopecia, respond to eczema, respond to obesity, respond to hypothyroidism. I'm sorry, I thought the goal was prevention, but as with everything else pertinent to our children with Trisomy 21, response to delay and dysfunction is all that is offered.

Why is hypothyroidism common to people with Trisomy 21? Why does their immune systems seem helpless agains URI's? Why is thinning hair a common trait? Why is eczema something we see starting in early childhood? If we took our children without Down Syndrome to the doctor with these complaints, we would be in for a lengthy hospital stay full of diagnostics to figure out how to prevent these things from occurring again. But when we bring our children with Down Syndrome to the doctor we receive the pity smile and gentle phrasing of the basic premise "that's what you get with Down Syndrome."

There is a "why" and better yet, there is an actual way to intervene that does no harm. Natural immunity boosters and natural food source vitamins formulated in specific formulas for our children maximizes health. The link between Down Syndrome and Alzheimers is a well established one. If the medical community is willing to entertain the notion of antioxidant therapy to reduce the oxidative stress in the brains of people with Alzheimers, why is the option condemned as quackery when we introduce it to our children before learning difficulties, memory difficulties, and behavioral changes occur?

There are also dissenting views from other parents. One of the big arguments that literally takes my breath away is the position that we should love our children unconditionally and not try to change them. Sincerely? We should not strive to maximize our children's health? What about education? God forbid anybody brings up the topic of appearance. When we try to minimize facial swelling and exaggeration of the palpebral fissures, protruding mandible and flattened nasal bridge with positional changes, use of natural nutrients and vitamins, we are attacked for not accepting our children for who they are? I bet those attacking us have taught a daughter to put on make-up at one point or another, or shelled out a small fortune in orthodontia to improve teeth alignment and smile. Like it or not, our children can be the best and brightest but will not be given a fair chance socially based on their appearance.

I can only tell you my experience. I traveled to another state to meet with a doctor who had worked on such research projects. He formally and officially told me not to waste my money. Then off the record, he told me to start supplementing immediately. We started when Lucas was 5 months old. His skin is beautiful, his hair thick and wavy, never had a bout of constipation in his life, maintains good thyroid levels, rarely gets sick except for URI's which I am currently having him evaluated by a naturopath for a method to safely boost his immunity to such viruses. Beyond that, my son's behavior most days puts my 6 and 9 year old to shame. Not a day goes by that I don't wonder how it is that Lucas is the best listener in the family. Lucas has no sensory issues and has already successfully completed a two year old preschool class with no problems. In fact, he was one of the most independent kids in the class. You've already read about his ability to learn and remember and I've had a doctor ask me for clarification on the "type" of DS Lucas has. It is in fact standard Trisomy 21.

As with anything else, why isn't the goal to intervene before a problem arises. If I know breast cancer runs in my family am I not diligent with mammograms? We have gone from the days of Langdon Down who hypothesized that down syndrome was a result of arrested development, to the discovery of the extra chromosome and a clear picture of what the overexpression of genes can potentially mean to health, to....what? Nothing more? We should accept there is nothing more to know?

I do not accept that. I find more and more people everyday who do not accept that. Interestingly enough it's like talking politics at Christmas, the words "Nutrition therapy" or "alternative approaches" must be tiptoed around until you know who your audience is. The hell with that. Our physicians must be held accountable. I've never believed in conspiracy theories, but maybe there is something to the relationship between drug companies and physicians. If nature holds they key to optimal health (for all of us really) there is no money to be made off of it.

If you are a new or expectant mother you need to know all you can about such interventions...quickly. Kent MacLeod's book can be bought inexpensively online (Vitamin Therapy and Down Syndrome; Unlocking the secrets to improved health, intelligence and behavior) and Kristen Morrison's book Naturally Better. 


I welcome debate on this entry and all the rest. We will only change the future for our children by opening ourselves to criticism. By shunning the "special" offers, by demanding an explanation of why our children get sick, and fearlessly telling anyone that we will find a better way.