Wednesday, April 28, 2010

My Take On The FightSma Conference Addendum

Here is something very interesting Sarah the dietician at the conference
really was negative about elemental amino acids and then mentioned
there are other choices like poly peptides like she Knew something we
didn't. here is some info from Dr. Bach which again is about 10 years

"Harpey et al. felt that there was a significant improvement in... "text_exposed");''>See More strength and function for 13 patients treated
with modified diets that provide high carbohydrate and elemental amino
acids and small chained polypeptides, such as Tolerex and Pediatric
Vivonex (Novartis, Minneapolis). (4) Although 90% of SMA type 1 patients
have been reported to die by 1 year of age, none of our 30 SMA type 1
patients using this diet have died and the oldest are now 8 years of
age. Therefore, I recommend prescription of Pediatric Vivonex for
infants with a diagnosis of SMA Type1."

I can't believe how totally unprofessional this woman is. She obviously hasn't done much research because if she is only coming up with this info now which Dr.
Bach published almost 10 years ago we aren't in very good hands are we!


Anonymous said...

BTW, Sarah represents Elecare - another elemental formula manufacturer. I'm not sure why she is on these panels when her product, by and large, is not even used by SMA families. She is out of touch and has a different agenda I think. :/ - NL

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