RE: Amino Acid Diet & Peg Tubes

[Guest guest]

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...supplemented 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=emlcntaolcom00000021)

[Guest guest]

The exact same thing happened to ne when the hospital MDA nutritionist

over prescribed too many packs and did not double dillute. ne ended up

with a bad GI bleed and back in the hospital.

It was at that point that I made a decision to stop listening to these

medical people who didn't have a clue and started listening to the parents

before me (namely Bodzo, creator of the AA diet as we now know it) who

were successfully using the diet and whose children/adolescents were

thriving.

*The limit on 2 packs a day (some use just 1 or 1 1/2) and double dillution

are absolutely critical to the success of the diet.*

**

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 2:20 PM, <VickiLJurney@...> wrote:

> 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...supplemented 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=emlcntaolcom00000021)

>

>

[Guest guest]

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@...>

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]

My wife and I don't have any problems with dairy!

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@...

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From: [mailto: ] On

Behalf Of Lori G

Sent: Sunday, December 28, 2008 6:01 PM

Subject: Re: Amino Acid Diet & Peg Tubes

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

<mailto:%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)