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Post by Googsmom aka Jennifer on Jul 20, 2008 18:14:41 GMT -5
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Post by Ericsmomma on Jul 20, 2008 18:29:50 GMT -5
Yikes! I looked it up, and Dr. Len Leshin has a report about this DMSO (an industrial solvent),
use in children with down syndrome. Sounds like snake oil to me....but hey, who knows!
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Post by Googsmom aka Jennifer on Jul 20, 2008 18:39:43 GMT -5
Mom used to use it on the horses and goats. He {this Dr. guy} is the snake!! Why would they say such a thing. Sad!!
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Post by Emilysmom on Jul 20, 2008 20:48:36 GMT -5
The stuff people try to sell!!! I've used DMSO for joint pain (rubbed onto my knees, not taken internally), and the only thing it did was give me a horrible taste in my mouth.
Susan
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Post by Renee' on Jul 20, 2008 21:21:48 GMT -5
That is insane! I had to put that stuff on my dad's knee when I was a kid. I hated it. The taste is horrid. I can't believe they say it is a cure.
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Post by CC on Jul 20, 2008 22:10:22 GMT -5
Hmm I guess Ebay will let one sell anything, even if it is fake  Seems just wrong that they are allowed to post such a silly thing up there "cure for DS" just crazy CC ~ |
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Post by damarasmom on Jul 21, 2008 9:41:39 GMT -5
Well, you gotta know it's a crock, when they misspelled many words in the write up!
You would think that a DR or book company would know how to spell ....
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Post by Chris too on Jul 21, 2008 12:35:44 GMT -5
The only cure for Down syndrome - or any chromosomal disorder for that matter- will be a genetic alteration. I can't see that on the horizon at all, can you?
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Post by marisa on Jul 21, 2008 14:08:43 GMT -5
I think this is really sad because there are people who are actually going to buy it and try it  Marisa |
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Post by jessjetland on Jul 21, 2008 16:07:31 GMT -5
I almost want to email them and ask for more information, just to see what they say. It may be good for a laugh
Jess
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Post by Googsmom aka Jennifer on Jul 21, 2008 17:22:33 GMT -5
I thought about that to Jess but last time I did something like that {them darn Ds dolls. Another post along time ago} I got in big twubble and got flagged for a week. I just can't believe they allow this stuff  |
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Post by malachismom on Jul 22, 2008 10:15:11 GMT -5
wow, this should allow it
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Post by Jackie on Jul 22, 2008 12:20:25 GMT -5
There will always be people who are out there trying to take advantage of people with chronic illnesses and disabilities.
Ed treats diabetics and the things his patients tell him they are thinking of trying is mind boggling. Everyone wants a cure or a quick fix. All you have to do is watch an hour of the home shopping channel to see how easy it is to talk people into believing something... ;D
In our 28 years of dealing with this...we have seen it all ...all the way from pig cell transplants, to sleeping in tire swings to return to the womb because you were born too soon, to vitamins the size of salt shakers, programs to reshape the head by sleeping in a box, patterning and the guilt that follows when you fail to keep up with that program. I think as parents we must learn to study and then decide if we believe in something enough to do it after looking at the pros and cons from reliable sources.
What you choose to do with your child...I might disagree with and vice versa.
But I do think a good place to start is with the NDSS and the NDSC and their statements on different therapies. As far as drugs and medicine...a good pediatrician can look at what it is and tell you whether it will do what it is hyped to do and if it will be harmful.
You can also bet if anyone develops a DS glue to "fix" it...it will be Breaking News on every channel!!!!
When Em was born...I got at least 3 letters from people all over advising me of the latest pig cell transplant therapy done in Germany. This is the treatment that later was discovered to promote development of MS in people who did it.
It is really hard to beat a loving family and educated parents who learn to seek out the best in traditional therapies and programs available for our kids.
Jackie
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Post by advocate4myself on Jul 22, 2008 17:50:25 GMT -5
This sounds very strange to me. You can't cure Down syndrome. You are born with it. This isn't something you can cure or change, however, you can improve on it. I get so tired of hearing this to be honest. I am actually proud to have Down syndrome. I am not ashamed! God blessed me with having this and I consider my Down syndrome a gift. If I didn't have Down syndrome I wouldn't have met so many good people or had the moments to educate them on what I have......Debbie
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Post by Googsmom aka Jennifer on Jul 22, 2008 18:56:59 GMT -5
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&
Susan, Proud mom of Michael (32), Justin (25) Emily (22ds), and Jordan (20).
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