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Kim,

Thanks for posting the information; I'm going to look into this as well. I'm

having a bit of trouble with the web site (internal server errors, etc on the

Canadian one) but I'll let you know how it goes..

Mom to Kennedy, 7 yrs with CHARGE, 15, 13 and wife to Graeme

New Brunswick, Canada

Visit our family on the web! http://ca.geocities.com/weirfamilyrogers

lisaweir@...

Kim Lauger wrote:

Jeannie,

There is a company called Mannatech that has a wonderful product called

Ambrotose, (glyconutrients that improve cellular communication). We have

used this with Dylan in combination with other products that were coarser,

which kept causing his tube to clog, so we stopped. Now they have the

Ambrotose plus antioxidants that I am in the process of ordering and hope it

doesn't cause the same problems with the g-tube. Dylan eats similarly to

MacKenzie, when he does eat. The marketing literature says " In an exciting

pilot human clinical study conducted internally by Mannatech, Ambrotose AO

was shown to increase protection against oxidative stress. Pilot data

indicates that one gram (2 capsules) of Ambrotose AO provided, on average,

over twice the protection observed after the consumption of an additional

five servings of fruits and vegetables per day over the same amount of time,

based on fasting-serum ORAC??? Values. Much of the success of Ambrotose AO

results from the inclusion of Ambrotose complex in the formula. When

antioxidants are taken with glyconutritional sugars, a gradual release

allows them to act as radical scavengers throughout the digestive tract,

which is necessary to provide continuous protection. I know the Ambrotose

has lots of scientific data verifying its claims including that of

stimulating the body's own production of healing stem cells. I figure it is

worth a try with Dylan. He is still on an infant formula at age 8yrs, so I

know he cannot be getting all he needs. He is already showing such changes

with the HANDLE exercises, but nutritional changes are our next step. I'll

let you know if I can tell any difference.

www.mannapages.com/jbcass www.glycoinformation.com www.glycoscience.org

www.stemcellfunction.com Our rep is jbcass@..., but they have a Canada

branch too.

We also give him one capsule of Omega Brites, which is a therapeutic dose of

Omega 3's. I stick a pin in the capsule and just drain the oil into one

bolus feed each day. www.omegabrite.com

Kim L

>

> Hi Everyone,

> Due to some weird computer problems and a severe sinus infection I haven't

> been on the list since before Christmas. Glad to be back and read all the

> inspiring posts.

> I have a question about nutrition. MacKenzie is on continuous feeds all

> night, she does eat some orally through the day but mostly breads and things

> that will disolve easily. I'm concerned that she not getting any of

> the " extras " that we get through veggies, fruits, fish etc. I'm thinking that

> if anyone can use some antioxidants it our kiddies. She doesn't tolerate

> boluses well and I'm wondering if there are some super vitamins out there.

> I'd appreciate any suggestions.

>

> Jeanie Colp

> mom to MacKenzie 6 CHARGE, Tyler 13, & Zachary 10

> Nova Scotia, Canada

>

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca, or

> email info@....

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at www.chargesyndrome.org or by calling

> 1-.

>

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