Re: Re: Amino Acid Diet (AAD)

[Guest guest]

Oh that's right, -- I do remember now that Danny is on the AA diet.

WOW -- Danny is 26 already???? Where has time gone??

You are correct in saying the true AA diet eliminates all meat & dairy. Most

type 2 folks following the AA diet do a " modified " AA diet, and include some

meat/dairy on a daily basis. The 'stronger' you are, the more complex

protein you can tolerate. But there is a threashold for everyone, and it is

individualized. For ne, she can tolerate about 15 grams of meat/dairy

protein a day. Her favorite food is steak and lobster (Figures -- expensive

tastes!) When she goes over that mark, I see an increase in night sweats,

and an increase in heart rate and respirations. Other type 2s that we know

have a lower threashold. Type 1s can tolerate little to no complex/animal

proteins.

And you are right on how quickly the body recovers and adapts to the new

form of protein. You truly start to feel better within a month, or less.

ne's strength improved, and she began to do things that I thought she

lost the ability to do. Even her ability to chew foods improved. And

aspirations have become almost nonexistent. When your body isn't spending

all its energy trying to break down food, it leaves more energy to do other

things that maybe you thought you lost the ability to do. So I guess I'd

like to say to the folks here that you really have nothing to lose by giving

the AA diet a try. And when do you that, limiting the quantity of animal

based/complex proteins that you are consuming will really make the

difference that much more obvious.

Tolerex must be obtained via a physician's script. I suggest giving your

doctor a copy of the Dr. article that I posted in the files yesterday.

Here is a link to

Tolerex<http://www.nestle-nutrition.com/products/Product.aspx?ProductId=bc535404\

-a19e-4c6f-8558-90eaf6a5556f>.

It used to be made by Novartis but last year was sold to Nestle.

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 Sat, Dec 27, 2008 at 4:00 AM, <ccoxcgc@...> wrote:

>

>

> My son, Danny, is 26 years old and has type 2 SMA. He has been using

> Tolerex for over 3 years now. Tolerex is powder that consists of

> elemental free amino acids, already broken down for use. Danny had

> gotten down to only 66 lbs and pretty weak before Tolerex, and weighs

> about 95 lbs now (which is a good weight for him). Even though the

> ideal " Amino Acid diet " calls for no meat protein or dairy, Danny

> still eats whatever he wants of regular food in small portions, slowly

> and in small bites, along with drinking a glass of the tolerex mixture

> 3 times a day with his meals.

>

> Danny started feeling benefits after just one week of the tolerex, and

> it didn't take long for his weight to come back and to get back some

> of his general strength. Danny had been having trouble using his mouse

> and his joystick before the tolerex, and is still doing better 3 years

> later. He's sick less often, feels better overall, and even has a

> better appetite as long as he stays consistent with the tolerex.

> Danny's insurance won't cover it, since he drinks it and has no

> g-tube, but generous families have kept him healthy by sharing some of

> their extra with us. I can only imagine what shape Danny might be in

> if it weren't for the tolerex, because he was definitely spiraling

> downward fast. I encourage you to read more about it and try it. I'd

> be glad to share our recipe for drinking it...just let me know.

>

>

>

>

> In <%40>, " Suzanne

> " <erinnesmom@...> wrote:

> >

> > The info from Brad and found at SMA Support is based on the 2 papers I

> > posted to the files here. Bodzo, mom to type 2 Krista (who is

> also 19 I

> > think) did the original research and put the original diet together. So

> > unless someone here picked it up from , or Price (mom

> of type

> > 1 Hannah & the first person taught the diet to) I don't think

> there is

> > anyone older on it.

> >

> > MJ is on it -- I'd consider her an adult. (She's on vacation right

> now an

> > does not have email access.) Victor Alverez is too (he's 19 or 20)

> but he is

> > not in this group.

> >

> > 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 Fri, Dec 26, 2008 at 10:07 PM, Lori G <lorig713@...> wrote:

> >

> > > I found this article

> > >

>

>

http://bradfisher.com/images/client_pics/The%20Full%20Article%20on%20the%20Amino\

%20Acid%20Diet.pdf

> > >

> > > and this one http://www.smasupport.com/diet.htm

> > >

> > > Are any adults in our group on this diet? If so, do/did you find it

> > > helped?

> > >

> > > Lori

> > >

> > > ________________________________

> > > From: Suzanne <erinnesmom@... <erinnesmom%40gmail.com>>

> > > <%40><%

> 40>

>

> > > Sent: Friday, December 26, 2008 8:07:02 PM

> > > Subject: Re: gtube vs. peg

> > >

> > > A G-tube can be placed in Intervention Radiology under a local

> anesthetic

> > > with light ( " twilight " ) sedation and go home the same day. Don't

> let anyone

> > > tell you it HAS to be placed using a general. That is NOT true.

> Shop around

> > > till you find a doc who will do it that way.

> > >

> > > Those of us coming up through the ranks now (moms & dads of older

> kids) can

> > > tell you that the nutrition is a HUGE component to managing

> strength issues

> > > with SMA. And following an amino acid diet has made a tremendous

> difference

> > > in our childrens' health & strength. Maybe the attached articles

> will help

> > > explain. One of the key components of the AA diet is that dairy & meat

> > > products require a great deal of energy expenditure from a person

> with SMA

> > > to breakdown and utilize. Proteins in the form of medium (or simple)

> > > branch-chained amino acids are the easiest for an SMA person to

> breakdown.

> > > Products like Ensure which are milk-based are much more difficult

> to break

> > > down and are not " ideal " proteins for someone with SMA.

> > >

> > > The AA diet has kinda become " my thing " so if you have any questions,

> > > please

> > > don't hesitate to ask!!!

> > >

> > > Suzanne

> > > Mom to ne, type 2, age 11 1/2yrs (5'8 " & 125lbs)

> > >

> > > 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 Fri, Dec 26, 2008 at 7:55 PM, Amy <blueyedazeaol (DOT) com> wrote:

> > >

> > > > Sucks, doesn't it? Will has been overly sensitive, trying to help me

> > > > all he can... I just feel so damn useless. I can drive my chair and

> > > > use my ipod- I know it could be worse, but it's all a combination of

> > > > not being able to go out alone, this shitty weather with 4 "

> snowbanks,

> > > > turning 30 soon. Ugh. I'll work through it, I always do.

> > > >

> > > > I will look into that. Calling Monday.

> > > >

> > > > thanks, L. =)

> > > >

> > > > On Dec 26, 2008, at 7:48 PM, Lori G wrote:

> > > >

> > > > > I am experiencing the same thing. My right wrist (my " good " hand)

> > > > > is suddenly very weak even with all the positioning we do. Maybe

> > > > > it's the lack of a good sleep or my poor nutrition or both. Or

> > > > > maybe it's the effect of all the antihistamines I am taking to

> help

> > > > > with the aspiration situation. Don't know, don't know. I think I

> > > > > will be drinking more Ensure.

> > > > >

> > > > > At the hospital I work at, g-tube placement is an out-patient

> > > > > procedure (even for ALS patients). Maybe you can do that.

> > > >

> > > >

> > > >

> > >

> > >

[Guest guest]

I have never heard of Tolerex, but my wife and I are on Pulmocare. Our

private insurances pay for it.

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

000-toolbar-banner-1

From: [mailto: ] On

Behalf Of sweetleo03

Sent: Sunday, December 28, 2008 9:18 AM

Subject: Re: Amino Acid Diet (AAD)

Do you know if Tolerex can be paid for by Medicaid? $45 for 6 packets

is a little over my price range!

[Guest guest]

It *should* be, with a drs script. Sometimes a LMN is needed. If you run

into that, let me know. I may know someone who has a LMN that worked.

The maximum amount of Tolerex consumed in 1 day should never exceed 2

packets.

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 1:44 PM, <d-kemp@...> wrote:

> I have never heard of Tolerex, but my wife and I are on Pulmocare. Our

> private insurances pay for it.

>

> 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 sweetleo03

> Sent: Sunday, December 28, 2008 9:18 AM

> <%40>

> Subject: Re: Amino Acid Diet (AAD)

>

> Do you know if Tolerex can be paid for by Medicaid? $45 for 6 packets

> is a little over my price range!

>

>

>

>