Connecting The Dots

I've not posted in a while, I have been in a whirlwind of new information and consultations. I have exponentially increased my understanding of the interconnectedness of many seemingly unconnected interventions. I mentioned in a previous post that I saw overlaps between symptoms of "the syndrome" and potential causes. I am more certain than ever that it is possible to have Trisomy 21 but little evidence of Down Syndrome.

I want to give you some new information I've obtained, but just as important as the information itself in the way I've obtained it - several unconnected sources, utilizing similar methods, achieving the same results.

I've mentioned in my blog about Kristen Morrison in Australia who has written Naturally Better, a phenomenally comprehensive book of natural supplements and techniques to intervene in our children's development before the symptoms of the syndrome become evident. She followed the programs from the Institutes of the achievement of human potential, intervened with natural supplements to maximize health and wellness (immunology being a part of that), and obtained treatments from an Osteopath (analogous to the chiropractor in the US.) I would encourage you to google her and look at the volume of photos of her son Gryffin. Besides his excellent health, cognition and physical development, he is visually very uninvolved, almost to the point that the T21 is undetectable.

I took Lucas to the chiropractor in the article I posted. He has a daughter with T21 who has had the benefit of his services since birth. She is a healthy and beautiful girl. Oh, and by the way, his wife is a naturalist, believing in natural interventions to maximize health and wellness.

We have provided supplements and vitamin therapy to Lucas from 5 months of age, used techniques based on neurodevelopmental principles, cleared his diet of sugars, preservatives, dyes and non organic food sources, and to a great degree gluten, increased his intake of essential things like glyconutrients, amino acids and enzymes, and guess what? Lucas is doing very well with minimal visual involvement as well.

That's three for three. I point this out only because I believe there is a whole movement going on, but no one is talking about it. If you wonder why, try convincing one of your child's doctors or specialists that you expect wellness, intelligence and uninvolved features (among many other things) from your child. Aside from the specialists, try convincing other parents who have only employed traditional methods and embraced the "special needs" approaches filled with compensatory techniques and albeit unknowingly, lowered expectations for their children.


I have just finished reading a written opinion that alternative approaches to neurologic problems are "irresponsible" and that no recognized medical research has ever proven any of it does anything. Admittedly knowing little of the person who wrote such a thing, I have to wonder if this person has ever thought about what she was saying. Natural supplements, gentle adjusting of the spine, vitamin therapy, Tomatis therapy, etc., are "irresponsible" and yet the formally recognized medical opinion for our children's health is to expect illness and limitation secondary to the extra chromosome, use of antibiotics, synthetic thyroid stimulating hormones and other drugs to manage the symptoms of the syndrome is responsible? Desirable? Effective? We as parents with aspirations of achievement for our children should not seek any and all methods that do no harm in effort to maximize health and development? I wonder if this lady has ever had a massage to reduce stress or taken a zinc lozenge to ease a cold. Rediculous is the criticism that stands in the way of true progress, forward thinking and success.


In working with our developmental pediatrician / naturopath (she is a rare breed indeed!) I have been learning much about the interconnectedness of things like omega 3 and speech, vitamin D and immunity, red blood cell size and the body's ability to use certain vitamins and nutrients. I have learned the most important thing I can do right now is to get a series of blood work done on Lucas so we can put the puzzle together. Naturally supplement what's out of balance so health is maximized. Why does that idea seem so radical?


As an OT I have always had respect for the fact our nervous systems control every part of our bodies and the pure structure of our anatomy can lead to nerve entrapment, tissue damage resulting in muscle imbalances, and even metabolic disturbances. Look no further than a patient with a spinal cord injury who profusely sweats, loses their hair, or has a dip in blood pressure from a change of gravitational force. The nervous system does not operate on a 1:1 cause effect basis, it is a complex series of events that control every part of us from thinking, to moving, to immunity. In researching the theory behind chiropractic care for children with neurologic disorders, I realize it is just that - a theory. But it is a darn good one. If I can maximize the efficiency of the metabolic system through a series of gentle adjustments to the spine to ensure everything is in balance, I would be hard pressed to see the downside.


In taking a natural approach, I find the overlaps are incredible. The immune system is being positively acted on by diet, supplementation, vitamin therapy and chiropractic care. Each blood test reveals one more clue, one more secret to how the extra chromosome has manifested itself in Lucas's metabolism and giving us the opportunity to supply what is deficient naturally. In turn, Lucas's cognition is enhanced by his overall wellness, antioxidant therapy, vitamin therapy, early literacy, therapeutic play, and most of all high expectations. His overall health and cognition allow him to further participate in school, social activities, and sports which in turn feed back into the loop of wellness. I could go on down the list of every part of the "syndrome" or "phenotype" and list at least 3 or 4 natural interventions which in turn impact 3 or 4 additional areas. 


There needs to be a plan, one that we are willing to talk about, one that we are willing to be criticized for by those we deeply respect. There are many new and expectant parents out there with a feeling in their gut that there is a better way. There are many who are finding their way despite the nay saying and criticism. I think of the list of things we have obtained for Lucas. All of them natural, none of them harmful. I think back to the woman who wants proof. Proof is impossible. If I apply all I know and have success it will be discounted as simply the way Lucas's genes expressed themselves. The only way I can prove my methods are having an impact is to stop them. I will never stop. I will continue to find non obtrusive ways to help my child achieve all he can. There needs to be a paradigm shift from managing symptoms of the syndrome to preventing the development of symptoms in the first place. If we understand the "why" then we can find a way. 


I keep thinking about the cognitive tests Lucas underwent this past summer. Some comments were "areas of major strength are memory and the ability to generalize information." Anyone familiar with the learning problems of children with T21 know that memory and generalization are two huge obstacles to learning. I also think about the doctor we flew to see in Baltimore who conducted research on the vitamin / antioxidant / enzyme therapy we embarked on telling me to start immediately. New thinking is that the earlier in life a child starts the therapy, the more cognitive function is enhanced. Proof? I don't need proof, I don't need statistical significance, I need to unravel the mystery and find new ways to help Lucas learn and be well..new ways that are effective and do no harm.