Wednesday, October 6, 2010

All the controversy

I thought a post about all of the areas that I've seen in the Down syndrome world that are somewhat controversial might make an interesting post. I was given some excellent advice when I first had Violette, and that was that we should make the best decisions we can for her, knowing what we know, and not to second guess ourselves.  That said, I have looked at everything on the list, and made decisions on Violette's behalf in most cases not to do any of them, mostly because I can't find enough evidence based research that they work (and with some on the list I've heard for five years that the evidence based research is coming "soon.") 

But on the other hand, there are individuals who I've met who SWEAR that the therapy/approach/tools/supplements listed below work for their child.  So what do you think?  How do you decide? What is the criteria you use to pick which to do? Do you do everything? Nothing, a bit here and there?  Only non-invasive things?  Share with me your thoughts and opinions on this. Oh, and if I'm missing something that has some controversial aspect, please post it with a link- I'm interested!

Speech Therapy
http://www.talktools.com/ - A protocol of whistles and straw therapy.  Since Violette was born they have been saying they are coming out with evidence based research to "prove" that the method works.

This article talks about how non-speech oral motor exercises like what is suggested in Talk Tools does not have evidence based research behind it:
http://communicationskillsforlife.files.wordpress.com/2012/09/parentnsome-asha11-final1.pdf


Neurodevelopmental Approach
http://iahp.org/downsyndrome/
http://ican-do.net/

My understanding is that neurodevelopmentalists advise against signing with your children, though evidence based research through DownsEd and others have proven its effectiveness with children with Down syndrome.

Here are some sites these practices:

http://en.wikipedia.org/wiki/The_Institutes_for_the_Achievement_of_Human_Potential
http://www.quackwatch.com/01QuackeryRelatedTopics/patterning.html


Vitamins/Supplements
Juice Plus+® -is a whole food based product providing the wide array of nutrients found in a variety of nutritious fruits, vegetables, and grains. http://www.juiceplus.com/

NuTriVene-D

They specialize in nutritional and dietary supplements for children and adults with special healthcare needs including Down syndrome.
www.Nutrivene.com/

Naturally Better: Dramatically Improve your Child's Life Naturally
http://naturallybetterkids.com/


http://newdowns.com/


http://www.speechnutrients.com/



But do they work?
Vitamin/Mineral Supplementation: There has been a lot of debate over recent decades regarding the usefulness of vitamin and/or mineral supplementation in people with Down Syndrome. I have collected here a number of scientific articles which address this topic. 

http://www.ds-health.com/vitamin.htm


Nutritional Supplements for Down Syndrome: A Highly Questionable Approach http://www.quackwatch.com/01QuackeryRelatedTopics/down.html


Nutrition Supplements for Down syndrome: What Happens When Hope Meets Hype.
 http://www.ds-health.com/48hrs.htm

A few peer-reviewed, double-blind scientific studies of the efficacy of supplements, vitamins, etc.


http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2267988 
http://www.ddhealthinfo.org/index.pacq?id=44&tier=2 
http://www.medpagetoday.com/Pediatrics/GeneralPediatrics/8468  http://www.nutraingredients.com/Research/Antioxidants-fail-to-benefit-children-with-Down-s-Syndrome
http://www.bmj.com/content/336/7644/594.pdf%2Bhtml

And a counter to the question "Do They Work?"
http://www.gotdownsyndrome.net/rebuttal.html


Changing Minds Protocol
A protocol of supplements claiming to improve cognitive functioning. Developed by a Dentist in Texas, CM includes a mix of off label prescription drugs and supplements:
http://www.changingmindsfoundation.org/

Many national and international Down syndrome organizations have questioned this protocol. The official statement on the subject from those organizations can be found here:

http://www.down-syndrome.org/statements/2106/

Green Tea
http://dstoner.net/Math_Science/Downs.html

Other's to add to this list: Coconut Oil,  Longvida Curcumin 


NONCONVENTIONAL THERAPIES FOR DOWN SYNDROME: 
A REVIEW AND FRAMEWORK FOR DECISION MAKING

http://special-needs.org/upload/DS21.pdf#page=274


COMPLEMENTARY AND ALTERNATIVE THERAPIES
FOR DOWN SYNDROME

http://www.apel-pediatri.it/Materiale/Vaccini/Alternative%20e%20vaccini/2005%20Complementary%20and%20alternative%20therapies%20for%20Down%20syndrome.pdf


5 comments:

Ria said...

We just started with a nuerodevelopmental approach in August. NACD - National Association for Child Development. Yes, they don't advocate signing but we're at a stage with Matthew now where we're trying to get him to talk more than sign, so we don't clash on that matter with the NACD. But we still use some signs with him along with words. I don't regret signing with him. I'm glad we taught him to sign, as a way to bridge the communication gap. Other than that, we agree with the NACD philosopies/ ideas, which is why we decided to give it a try.

RK said...

I can only vouch for Talk Tools in it's approach to the feeding issues and oral motor work that Braska is benefitting greatly from. It has been the turning point in her feeding process. But of course we sign...alot. Though she's doing less since her speech has become so clear and others can now understand her as well as family.

And we use gingko biloba with Braska, just started a few weeks ago, and as skeptical as I was, it's been crazy to watch. It's like the puzzle pieces in her brain just fit. The speech that has been good, clear, and spontaneous is not full language, conversations, and concepts that never showed up before. It's pretty amazing how it's helped her connect the dots, so to speak, with that she knew and what she was able to express.

Cheri said...

Thank you for this post and all the links! Can't wait to check them out!

doozee said...

Can't wait to check them out too! I was pretty bummed when my laptop went capoot and lost all the other links that I'd carefully bookmarked from you over the past 5 months or so... this should get me going again :)

Yo Mamma Mamma! said...

http://newdowns.com/