Re: Amino Acid Diet & Peg Tube

[Guest guest]

In my opinion, it is not the best option, because it is dairy based. I know

others will disagree.

But once you try the AA diet/Tolerex, you will see that there is a good

option, and then there is the BEST option.

Suzanne

Jesus said, ' " I tell you the truth, when you refused to help the least of

these, my brothers and sisters, you were refusing to help Me. " 25:45

<><

For the latest and greatest, visit: www.our-sma-angels.com/neRose

On Sun, Dec 28, 2008 at 9:00 PM, Lori G <lorig713@...> wrote:

> Someone said Ensure is considered a dairy which would not be in AAD. If

> processing dairy is difficult for SMA'ers, how can Ensure help?

>

> ________________________________

> From: " VickiLJurney@... <VickiLJurney%40aol.com> " <

> VickiLJurney@... <VickiLJurney%40aol.com>>

> <%40>

> Sent: Sunday, December 28, 2008 1:20:00 PM

> Subject: Re: Amino Acid Diet & Peg Tubes

>

> The amino acid diet (Tolorex) by itself gave me terrible diarrhea for three

>

> months and made me significantly weaker than I already was. After

> consulting

> with a nutritionist who works strictly with ALS/SMA/MD patients, my diet

> was

> changed to regular Ensure...supplement ed with ProSource (a plant based

> protein

> powder), potassium chloride, and cranberry juice. After that, I became

> stronger

> and gained 48 lbs.

>

> My peg tube placement took 15 minutes and was performed by a G.I. doctor

> who

> was referred to my by the neurologist who runs the MDA Clinic here in San

> . It was done on an outpatient basis and left me a little sore for

> 2-3

> days. I went into the G.I. Clinic at 1:00 and was home by 2:15. I chose to

> have a

> peg tube because it is less likely to pop out and easier to change...which

> doesn't hurt at all, but is a bit creepy feeling.

>

> The metabolic requirements for adults with SMA are different from those for

>

> kids. Keep that in mind when researching amino acid diets.

>

> Just my experience as an extremely active, 50 yr. old, SMAer who has not

> had

> a respiratory infection in 2 years!

>

> Vicki

> ************ **Don't be the last to know - click here for the latest news

> that

> will have people talking. (http://www.aol. com/?ncid= emlcntaolcom0000

> 0021)

>

>

[Guest guest]

Thank you.

________________________________

From: Suzanne <erinnesmom@...>

Sent: Sunday, December 28, 2008 8:08:42 PM

Subject: Re: Amino Acid Diet & Peg Tube

In my opinion, it is not the best option, because it is dairy based. I know

others will disagree.

But once you try the AA diet/Tolerex, you will see that there is a good

option, and then there is the BEST option.

Suzanne

Jesus said, ' " I tell you the truth, when you refused to help the least of

these, my brothers and sisters, you were refusing to help Me. " 25:45

<><

For the latest and greatest, visit: www.our-sma- angels.com/ neRose

On Sun, Dec 28, 2008 at 9:00 PM, Lori G <lorig713 (DOT) com> wrote:

> Someone said Ensure is considered a dairy which would not be in AAD. If

> processing dairy is difficult for SMA'ers, how can Ensure help?

>

> ____________ _________ _________ __

> From: " VickiLJurney@ aol.com <VickiLJurney% 40aol.com> " <

> VickiLJurney@ aol.com <VickiLJurney% 40aol.com> >

> @gro ups.com <% 40groups. com>

> Sent: Sunday, December 28, 2008 1:20:00 PM

> Subject: Re: Amino Acid Diet & Peg Tubes

>

> The amino acid diet (Tolorex) by itself gave me terrible diarrhea for three

>

> months and made me significantly weaker than I already was. After

> consulting

> with a nutritionist who works strictly with ALS/SMA/MD patients, my diet

> was

> changed to regular Ensure...supplement ed with ProSource (a plant based

> protein

> powder), potassium chloride, and cranberry juice. After that, I became

> stronger

> and gained 48 lbs.

>

> My peg tube placement took 15 minutes and was performed by a G.I. doctor

> who

> was referred to my by the neurologist who runs the MDA Clinic here in San

> . It was done on an outpatient basis and left me a little sore for

> 2-3

> days. I went into the G.I. Clinic at 1:00 and was home by 2:15. I chose to

> have a

> peg tube because it is less likely to pop out and easier to change...which

> doesn't hurt at all, but is a bit creepy feeling.

>

> The metabolic requirements for adults with SMA are different from those for

>

> kids. Keep that in mind when researching amino acid diets.

>

> Just my experience as an extremely active, 50 yr. old, SMAer who has not

> had

> a respiratory infection in 2 years!

>

> Vicki

> ************ **Don't be the last to know - click here for the latest news

> that

> will have people talking. (http://www.aol. com/?ncid= emlcntaolcom0000

> 0021)

>

>

[Guest guest]

Lol Do you own stock in the company Suzanne?

Kemp

Director, OurGV Rewards

<http://www.ourgvrewards.com/> http://www.ourgvrewards.com

Phone: 714-974-5799

Business Phone: 714-974-5693

Cell Phone: 714-244-5920

Phone: 949-579-9465

Email 1: d-kemp@...

Email 2: dkemp@...

<http://www.ourgvmall.com/djk> banner021.jpg

<http://www.benefitbar.com/benefitbar/subscribe/toolbar.php?toolbarId=1500>

000-toolbar-banner-1

From: [mailto: ] On

Behalf Of Suzanne

Sent: Sunday, December 28, 2008 6:09 PM

Subject: Re: Amino Acid Diet & Peg Tube

In my opinion, it is not the best option, because it is dairy based. I know

others will disagree.

But once you try the AA diet/Tolerex, you will see that there is a good

option, and then there is the BEST option.

Suzanne

Jesus said, ' " I tell you the truth, when you refused to help the least of

these, my brothers and sisters, you were refusing to help Me. " 25:45

<><

For the latest and greatest, visit: www.our-sma-angels.com/neRose

On Sun, Dec 28, 2008 at 9:00 PM, Lori G <lorig713@...

<mailto:lorig713%40> > wrote:

> Someone said Ensure is considered a dairy which would not be in AAD. If

> processing dairy is difficult for SMA'ers, how can Ensure help?

>

> ________________________________

> From: " VickiLJurney@... <mailto:VickiLJurney%40aol.com>

<VickiLJurney%40aol.com> " <

> VickiLJurney@... <mailto:VickiLJurney%40aol.com>

<VickiLJurney%40aol.com>>

> <mailto:%40>

<%40>

> Sent: Sunday, December 28, 2008 1:20:00 PM

> Subject: Re: Amino Acid Diet & Peg Tubes

>

> The amino acid diet (Tolorex) by itself gave me terrible diarrhea for

three

>

> months and made me significantly weaker than I already was. After

> consulting

> with a nutritionist who works strictly with ALS/SMA/MD patients, my diet

> was

> changed to regular Ensure...supplement ed with ProSource (a plant based

> protein

> powder), potassium chloride, and cranberry juice. After that, I became

> stronger

> and gained 48 lbs.

>

> My peg tube placement took 15 minutes and was performed by a G.I. doctor

> who

> was referred to my by the neurologist who runs the MDA Clinic here in San

> . It was done on an outpatient basis and left me a little sore for

> 2-3

> days. I went into the G.I. Clinic at 1:00 and was home by 2:15. I chose to

> have a

> peg tube because it is less likely to pop out and easier to change...which

> doesn't hurt at all, but is a bit creepy feeling.

>

> The metabolic requirements for adults with SMA are different from those

for

>

> kids. Keep that in mind when researching amino acid diets.

>

> Just my experience as an extremely active, 50 yr. old, SMAer who has not

> had

> a respiratory infection in 2 years!

>

> Vicki

> ************ **Don't be the last to know - click here for the latest news

> that

> will have people talking. (http://www.aol. com/?ncid= emlcntaolcom0000

> 0021)

>

>

[Guest guest]

NOPE!! Wish I did!

Just a believer in the diet. I saw how it literally saved my daughter's life

and then I made it my passion and mission to know everything there is to

know about it. ne has been on the diet for 7 years (modified, because

she does eat some animal protein) and I have started countless other

families/individuals down this path and have seen nothing but success with

it.

It'd (Nestle) probably be about the only thing to hold stock in these days!

:-P

:-)

Suzanne

Jesus said, ' " I tell you the truth, when you refused to help the least of

these, my brothers and sisters, you were refusing to help Me. " 25:45

<><

For the latest and greatest, visit: www.our-sma-angels.com/neRose

On Sun, Dec 28, 2008 at 11:23 PM, <d-kemp@...> wrote:

> Lol Do you own stock in the company Suzanne?

>

> Kemp

>

> Director, OurGV Rewards

>

> <http://www.ourgvrewards.com/> http://www.ourgvrewards.com

>

> Phone: 714-974-5799

>

> Business Phone: 714-974-5693

>

> Cell Phone: 714-244-5920

>

> Phone: 949-579-9465

>

> Email 1: d-kemp@... <d-kemp%40sbcglobal.net>

>

> Email 2: dkemp@... <dkemp%40ourgvrewards.com>

>

> <http://www.ourgvmall.com/djk> banner021.jpg

>

> <http://www.benefitbar.com/benefitbar/subscribe/toolbar.php?toolbarId=1500

> >

> 000-toolbar-banner-1

>

> From: <%40> [mailto:

> <%40>] On

> Behalf Of Suzanne

> Sent: Sunday, December 28, 2008 6:09 PM

> <%40>

> Subject: Re: Amino Acid Diet & Peg Tube

>

> In my opinion, it is not the best option, because it is dairy based. I know

> others will disagree.

>

> But once you try the AA diet/Tolerex, you will see that there is a good

> option, and then there is the BEST option.

>

> Suzanne

>

> Jesus said, ' " I tell you the truth, when you refused to help the least of

> these, my brothers and sisters, you were refusing to help Me. "

> 25:45

> <><

>

> For the latest and greatest, visit: www.our-sma-angels.com/neRose

>

> On Sun, Dec 28, 2008 at 9:00 PM, Lori G

<lorig713@...<lorig713%40>

> <mailto:lorig713%40 <lorig713%2540>> > wrote:

>

> > Someone said Ensure is considered a dairy which would not be in AAD. If

> > processing dairy is difficult for SMA'ers, how can Ensure help?

> >

> > ________________________________

> > From: " VickiLJurney@... <VickiLJurney%40aol.com> <mailto:

> VickiLJurney%40aol.com <VickiLJurney%2540aol.com>>

> <VickiLJurney%40aol.com> " <

> > VickiLJurney@... <VickiLJurney%40aol.com> <mailto:

> VickiLJurney%40aol.com <VickiLJurney%2540aol.com>>

> <VickiLJurney%40aol.com>>

> > <%40> <mailto:

> %40 <%2540>>

> <%40>

>

> > Sent: Sunday, December 28, 2008 1:20:00 PM

> > Subject: Re: Amino Acid Diet & Peg Tubes

> >

> > The amino acid diet (Tolorex) by itself gave me terrible diarrhea for

> three

> >

> > months and made me significantly weaker than I already was. After

> > consulting

> > with a nutritionist who works strictly with ALS/SMA/MD patients, my diet

> > was

> > changed to regular Ensure...supplement ed with ProSource (a plant based

> > protein

> > powder), potassium chloride, and cranberry juice. After that, I became

> > stronger

> > and gained 48 lbs.

> >

> > My peg tube placement took 15 minutes and was performed by a G.I. doctor

> > who

> > was referred to my by the neurologist who runs the MDA Clinic here in San

> > . It was done on an outpatient basis and left me a little sore for

> > 2-3

> > days. I went into the G.I. Clinic at 1:00 and was home by 2:15. I chose

> to

> > have a

> > peg tube because it is less likely to pop out and easier to

> change...which

> > doesn't hurt at all, but is a bit creepy feeling.

> >

> > The metabolic requirements for adults with SMA are different from those

> for

> >

> > kids. Keep that in mind when researching amino acid diets.

> >

> > Just my experience as an extremely active, 50 yr. old, SMAer who has not

> > had

> > a respiratory infection in 2 years!

> >

> > Vicki

> > ************ **Don't be the last to know - click here for the latest news

> > that

> > will have people talking. (http://www.aol. com/?ncid= emlcntaolcom0000

> > 0021)

> >

> >

[Guest guest]

Great!

Kemp

Director, OurGV Rewards

<http://www.ourgvrewards.com/> http://www.ourgvrewards.com

Phone: 714-974-5799

Business Phone: 714-974-5693

Cell Phone: 714-244-5920

Phone: 949-579-9465

Email 1: d-kemp@...

Email 2: dkemp@...

<http://www.ourgvmall.com/djk> banner021.jpg

<http://www.benefitbar.com/benefitbar/subscribe/toolbar.php?toolbarId=1500>

000-toolbar-banner-1

From: [mailto: ] On

Behalf Of Suzanne

Sent: Sunday, December 28, 2008 8:33 PM

Subject: Re: Amino Acid Diet & Peg Tube

NOPE!! Wish I did!

Just a believer in the diet. I saw how it literally saved my daughter's life

and then I made it my passion and mission to know everything there is to

know about it. ne has been on the diet for 7 years (modified, because

she does eat some animal protein) and I have started countless other

families/individuals down this path and have seen nothing but success with

it.

It'd (Nestle) probably be about the only thing to hold stock in these days!

:-P

:-)

Suzanne

Jesus said, ' " I tell you the truth, when you refused to help the least of

these, my brothers and sisters, you were refusing to help Me. " 25:45

<><

For the latest and greatest, visit: www.our-sma-angels.com/neRose

On Sun, Dec 28, 2008 at 11:23 PM, <d-kemp@...

<mailto:d-kemp%40sbcglobal.net> > wrote:

> Lol Do you own stock in the company Suzanne?

>

> Kemp

>

> Director, OurGV Rewards

>

> <http://www.ourgvrewards.com/> http://www.ourgvrewards.com

>

> Phone: 714-974-5799

>

> Business Phone: 714-974-5693

>

> Cell Phone: 714-244-5920

>

> Phone: 949-579-9465

>

> Email 1: d-kemp@... <mailto:d-kemp%40sbcglobal.net>

<d-kemp%40sbcglobal.net>

>

> Email 2: dkemp@... <mailto:dkemp%40ourgvrewards.com>

<dkemp%40ourgvrewards.com>

>

> <http://www.ourgvmall.com/djk> banner021.jpg

>

> <http://www.benefitbar.com/benefitbar/subscribe/toolbar.php?toolbarId=1500

> >

> 000-toolbar-banner-1

>

> From: <mailto:%40>

<%40> [mailto:

> <mailto:%40>

<%40>] On

> Behalf Of Suzanne

> Sent: Sunday, December 28, 2008 6:09 PM

> <mailto:%40>

<%40>

> Subject: Re: Amino Acid Diet & Peg Tube

>

> In my opinion, it is not the best option, because it is dairy based. I

know

> others will disagree.

>

> But once you try the AA diet/Tolerex, you will see that there is a good

> option, and then there is the BEST option.

>

> Suzanne

>

> Jesus said, ' " I tell you the truth, when you refused to help the least of

> these, my brothers and sisters, you were refusing to help Me. "

> 25:45

> <><

>

> For the latest and greatest, visit: www.our-sma-angels.com/neRose

>

> On Sun, Dec 28, 2008 at 9:00 PM, Lori G <lorig713@...

<mailto:lorig713%40> <lorig713%40>

> <mailto:lorig713%40 <lorig713%2540>> > wrote:

>

> > Someone said Ensure is considered a dairy which would not be in AAD. If

> > processing dairy is difficult for SMA'ers, how can Ensure help?

> >

> > ________________________________

> > From: " VickiLJurney@... <mailto:VickiLJurney%40aol.com>

<VickiLJurney%40aol.com> <mailto:

> VickiLJurney%40aol.com <VickiLJurney%2540aol.com>>

> <VickiLJurney%40aol.com> " <

> > VickiLJurney@... <mailto:VickiLJurney%40aol.com>

<VickiLJurney%40aol.com> <mailto:

> VickiLJurney%40aol.com <VickiLJurney%2540aol.com>>

> <VickiLJurney%40aol.com>>

> > <mailto:%40>

<%40> <mailto:

> %40 <%2540>>

> <%40>

>

> > Sent: Sunday, December 28, 2008 1:20:00 PM

> > Subject: Re: Amino Acid Diet & Peg Tubes

> >

> > The amino acid diet (Tolorex) by itself gave me terrible diarrhea for

> three

> >

> > months and made me significantly weaker than I already was. After

> > consulting

> > with a nutritionist who works strictly with ALS/SMA/MD patients, my diet

> > was

> > changed to regular Ensure...supplement ed with ProSource (a plant based

> > protein

> > powder), potassium chloride, and cranberry juice. After that, I became

> > stronger

> > and gained 48 lbs.

> >

> > My peg tube placement took 15 minutes and was performed by a G.I. doctor

> > who

> > was referred to my by the neurologist who runs the MDA Clinic here in

San

> > . It was done on an outpatient basis and left me a little sore

for

> > 2-3

> > days. I went into the G.I. Clinic at 1:00 and was home by 2:15. I chose

> to

> > have a

> > peg tube because it is less likely to pop out and easier to

> change...which

> > doesn't hurt at all, but is a bit creepy feeling.

> >

> > The metabolic requirements for adults with SMA are different from those

> for

> >

> > kids. Keep that in mind when researching amino acid diets.

> >

> > Just my experience as an extremely active, 50 yr. old, SMAer who has not

> > had

> > a respiratory infection in 2 years!

> >

> > Vicki

> > ************ **Don't be the last to know - click here for the latest

news

> > that

> > will have people talking. (http://www.aol. com/?ncid= emlcntaolcom0000

> > 0021)

> >

> >