Tuesday, April 19, 2011

Why, Oh Why?

Last week, a mother of a boy with Down syndrome called since she had seen our website. She had a lot of questions, because she said she needed help and wanted to learn more to help her son.

I spoke with her for around 20-30 minutes telling her a lot about TNI, oral motor therapy, autism related stuff, etc.

As I spoke with her, especially when it came to nutritional intervention, she said "Why have I never been told about this in the 10 years my son has been born?" I told her that we weren't told about it either. We had to research so much before we even ran across a hint about nutritional intervention. And with the countless hours we spent researching, it took us 8 months to find out about it.

When we did find out about Nutrivene, our curiosity about it was met with a lot of negativity on some online forums. It was hidden like a needle in a haystack. Why?

Oral motor therapy is also hidden quite well from many people. This mom who I spoke with, who has a 10 year old son with very limited speech, and who is even receiving speech therapy, had never heard of oral motor therapy. Why?

These two very basic interventions are so hard to find information about in the general literature regarding Down syndrome. In fact, most of the time, as the vast majority of parents would admit, they weren't informed about this in the literature they received when their child was diagnosed with DS. Why?

Targeted Nutritional Intervention is such a simple concept and something that has been researched and proven time and again for 60+ years. This was even used by the doctor who discovered what caused Down syndrome, Dr. Jerome Lejeune. He used nutritional intervention in people with Down syndrome with good success. Why is this not shown everywhere? Why is all the other research which shows how well nutritional intervention works not made well aware to everyone?

Some may say, "If nutritional intervention really worked, everyone would be using it." You know what, that's not the case. Nutritional intervention really does work. There are thousands of people using it with good success. But it still is very much kept on the down-low with the national DS associations, lots of doctors, social services, regional centers, etc. In fact, some of the national DS associations have articles written to say that nutritional intervention doesn't work. Why is that?

The same goes with oral motor/placement therapy. It works so incredibly well with a lot of people. But, it's not the first thing offered to a child with weak muscle tone in the mouth. Again, I ask, why?

There are a lot of questions and not many answers. It makes absolutely no sense to me that something so simple would be hushed by so many. I have a lot of suspicions as to why these things, particularly the nutritional intervention, is kept hidden. But, we don't know for sure.

I do know one thing. Dr Turkel, one of the first doctors who used nutritional intervention in DS, was banned from selling his vitamin protocol anywhere outside of Michigan from the FDA. Dr. Turkel experienced so much hassle from the FDA because of his protocol. I'll try to share some of the info from his book on here at some point. It's very interesting, but it really makes you wonder why there was such an issue? It's simply nutritional supplements.

So, this post will end with no answers, but a lot of questions.

Lord willing, I will continue to share about TNI & oral motor therapy with families, because I have seen the immense benefits they have. I know they work.



Adelaide Dupont said...

And it very often does take a good researcher and a small hint to find things which may work.

I think it's to do with the industrial nexus: speech therapy, occupational therapy, infant stimulation, physical therapy and the rest.

And here I was thinking that between 2001-2011 that knowledge would have exploded!

Of course it is so about other small therapies and conditions.

Go to a fair and chase what might seem interesting.

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