Re: Amino Acid Diet (AAD)

[Guest guest]

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>

> 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]

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 , " 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>

> > 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]

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

is a little over my price range!