Tuesday, June 8, 2010

Supportive Doctors

In any given week or day, I more than likely got an email or emails from moms, dads, grandparents or just someone wanting to find out more information about Nutrivene or TNI in general. Last week I was corresponding with one mom and she asked about something that almost always comes up, along the lines of . . .  "what information do I give to my doctor(s)?" or "how do I tell my pediatrician about TNI?"

This can be a tricky point for some families when it comes to giving TNI. There are some who trust their doctors so much, that if the doctor doesn't agree with TNI, then they won't give it to their child. Which is fine, if that's the way someone wants to live. Then there are some who will give their doctor the information, but still give it to their child no matter what the doctor says. Or some who don't even ask their doctor about it.

So, I thought I'd share what we did and what I often tell parents.

When we found out about Nutrivene when Osiyyah was 8 months old (he's not 5 years old), from everything I had researched (which was a lot!), we decided we had nothing to lose and possibly all to gain. We started Osiyyah on Nutrivene without asking any of his "doctors" who we had been seeing at the time. Because, in our mind, there was nothing these doctors would say that would make us not give it to Osiyyah. After all, they knew very little about Down syndrome, so how much help would they really be . . . not much!

But, we did get the Physicians Packet that International Nutrition has. This packet contains a bunch of information, research and studies on the benefits of TNI. I'd highly suggest this for anyone who wants to give their doctor some basic, yet good information, on TNI.

Anyways, we got the packet, made several copies and gave a packet to each doctor he had seen since he was born. We gave it to them just as an FYI and a hope that they would remember it and use it or recommend it for other kids with DS who may come into their practice.

From our experiences with doctors and professionals in Osiyyah's life, the vast majority of the doctors have known hardly anything about DS or haven't been supportive of TNI. And this is something that I hear about all too often on the DS listservs I'm on . . . parents who's doctors are in complete disagreement with Nutrivene/TNI. So, when we met Dr. Leichtman when Osiyyah was a little over a year old, it was such a relief. A relief to have a doctor who actually knew what he was talking about and could tell us something and we didn't have to teach him! And a doctor who was in support of Nutrivene!

But, most families only have their regular doctor/pediatrician and often times it is not someone who is in support of TNI. These families have to share their knowledge with their doctor, which is great, but it can also be a challenge.

This mom I was recently corresponding with, took information to her daughter's pediatrician about Nutrivene and guess what . . . he was fully supportive! In fact he highly recommends it. When she told me that, I was amazed. What a breath of fresh air for sure! He sounds like a great doctor ;).

Overall, I think it is a good thing to share about Nutrivene/TNI with your child's pediatrician, doctors and therapists and hope that they will be supportive, like this one mother's doctor. And even if they aren't supportive, I'd question as to why. Why are they against something that is so beneficial and should not cause any harm? Is it just because of their unfamiliarity with it? Just because it's "against the grain"? Or . . .? Well, then take their concerns, pair up with the research that has been done on TNI in children with DS and see if their concerns are even valid or if it's complete hogwash.

I'd highly recommend you give your doctor the Physician's Packet which International Nutrition offers or at least print some articles/resources from the internet to take to your doctor.

Two things which many people (not just doctors) bring up in regards to TNI is:

1) It's not scientifically proven in a "double-blind clinical trial"

~ Yes, it hasn't been in a double-blind clinical trial yet, because it is too expensive to do and the pharmaceutical company is not interested in doing something about a supplement like this. There isn't a massive market for it. Besides, there are t-o-n-s of studies showing the massive benefits of all the ingredients in Nutrivene. And there are even studies on children taking TNI and various antioxidant supplements and seeing great benefits. Have any of you heard or read about the craziness and the ringer the FDA put Dr. Turkel through when he tried to get the "U Series" FDA approved? Probably not . . . but that's definitely a post for another day, since it's way too much to post here!

2) It's "mega-doses" of vitamins.

This is just plain non-sense. And one of my biggest pet-peeves that I hear from those who are against TNI. The doses in Nutrivene are not mega-doses in *any* sense of the word! I wrote a whole article on this for our book and I will post that up soon, so that it goes into more depth.

Here are a few resources I'd recommend if you are looking for information just to print from online:

~ Dr. Leichtman's TNI in Children & Adults with Down Syndrome

~ Very detailed, in-depth article on TNI in a rebuttal to a very commonly used article against TNI


~ TNI Articles from Riverbend

~ Supplement Abstracts

~ TNI for Children with Down Syndrome by Dr. Gelb

~ Can Cognitive Deterioration associted with Down syndrome be reduced by Dr. Thiel

~ Nutrition and Down Syndrome by Dr. Thiel

~ The Effects of Supplementation in Children with Down syndrome by Dr. Peeters-Ney

I hope this helps some and as always, feel free to email me or leave a comment here and I'd be glad to help as much as I can!



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