Re: Amino Acid Diet and those looking to make a change/Another product

[Guest guest]

One supplement that I include in ne's diet is this Complete Amino

Acid<http://www.shsna.com/pages/complete_amino_acid.htm>,

also made by Nutricia. The Tolerex does not give my daughter enough protein

(in amino acid form) and, as the information I posted yesterday indicated,

certain supplements have to be added because the Tolerex is not all

inclusive. As I mentioned earlier, she does eat some animal protein (because

she really enjoys it, but doesn't necessarily eat it every day); however,

she would still have a protein deficit. She's been on it for almost a year

and has done well with it.

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 Mon, Dec 29, 2008 at 7:53 PM, Amy <blueyedaze@...> wrote:

> Agreed!

>

> On Dec 29, 2008, at 6:49 PM, Lori G wrote:

>

> > So, thank you and please continue to share information with us.

>

>

[Guest guest]

How did you know what to add and how did you know when you had just the right

combination?

Sent from my Verizon BlackBerry

Re: Amino Acid Diet and those looking to make a

change/Another product

One supplement that I include in ne's diet is this Complete Amino

Acid<http://www.shsna.com/pages/complete_amino_acid.htm>,

also made by Nutricia. The Tolerex does not give my daughter enough protein

(in amino acid form) and, as the information I posted yesterday indicated,

certain supplements have to be added because the Tolerex is not all

inclusive. As I mentioned earlier, she does eat some animal protein (because

she really enjoys it, but doesn't necessarily eat it every day); however,

she would still have a protein deficit. She's been on it for almost a year

and has done well with it.

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 Mon, Dec 29, 2008 at 7:53 PM, Amy <blueyedaze@...> wrote:

> Agreed!

>

> On Dec 29, 2008, at 6:49 PM, Lori G wrote:

>

> > So, thank you and please continue to share information with us.

>

>

[Guest guest]

One of the very important things to do when working with an elemental diet

like this (or any other medical diet) is to have periodic bloodwork done to

determine specifically what your body needs and what may need close

monitoring. Usually the labs that are recommended are a fasting quantitative

plasma amino acid profile, basic metabolic panels (including albumien &

pre-albumien levels), mg, zinc, phos, creatine, vitamin D (for those of us

not fortunate to have sunshine everyday) and for women, iron. (Most of these

were listed in the articles I posted.)

When first starting on the diet, it is recommended to have labs drawn every

3 mos. When the diet is essentially stabilized, then yearly labs are okay.

For someone going through puberty (and whose diet is constantly being

adjusted for growth or new weight gain), labs should be drawn every 3 mos.

The lab tests have established normal ranges. If you have a doctor you trust

to work with you on the AA diet, together you will be able to decide what

you need to add and what may need to be removed or reduced. For example, in

ne's most recent labs, her vitamin D level was 39 and the range for her

is 25-80. Since we live in Mich. and see very little sun through the winter,

we are increasing her vitamin D (and calcium). Her iron was 28 and the range

is 9-52. Since ne will be starting her periods soon, we upped her iron

supplement. (Less than 30% of all iron ingested is actually absorbed So

let's say that you take 100mgs of an iron supplement. Only about 30mgs will

be absorbed --- less if you take iron with a dairy drink, because calcium

binds iron. Iron is best taken with a fruit juice). So her doc and I have

agreed on certain levels for certain vitamins and supplements. Another

example is the vitamin Bs. The doc prefers to keep the Bs on the high normal

side.

Talk with your doctor and have then explain to you what each test is for and

make sure you keep copies of all results.

As far as the number of grams of protein that I add to ne's diet, I aim

for 2- 2.5g/kg of body weight FOR ERINNE. That's where the Complete Amino

Acid mix comes in. Even with adding those, we still need to check each amino

acid and it is possible that we may have to add individual aminos.A few

people will require more; many will require less. Remember, ne is going

through puberty, is in a huge growth spurt right now, just came through

major surgery and is 5'8 " and about 125lbs at age 11 1/2 yrs old. So her

needs will be higher than most.

Hope that answered your questions.

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 Mon, Dec 29, 2008 at 9:56 PM, Lori <lorig713@...> wrote:

> How did you know what to add and how did you know when you had just the

> right combination?

>

>

> Sent from my Verizon BlackBerry

>

> Re: Amino Acid Diet and those looking to make a

> change/Another product

>

>

> One supplement that I include in ne's diet is this Complete Amino

> Acid<http://www.shsna.com/pages/complete_amino_acid.htm>,

> also made by Nutricia. The Tolerex does not give my daughter enough protein

>

> (in amino acid form) and, as the information I posted yesterday indicated,

> certain supplements have to be added because the Tolerex is not all

> inclusive. As I mentioned earlier, she does eat some animal protein

> (because

> she really enjoys it, but doesn't necessarily eat it every day); however,

> she would still have a protein deficit. She's been on it for almost a year

> and has done well with it.

>

> 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 Mon, Dec 29, 2008 at 7:53 PM, Amy

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

> wrote:

>

> > Agreed!

> >

> > On Dec 29, 2008, at 6:49 PM, Lori G wrote:

> >

> > > So, thank you and please continue to share information with us.

> >

> >

[Guest guest]

Hi Suzanne,

I have been appreciating your AAD info. With this supplement, is it OK for

adults? I¹m not sure what it means when theye say ³not for parenteral use²

does that mean not for adults to take? I¹m 37 type 2, vegan diet.

Thanks,

On 12/29/08 8:11 PM, " Suzanne " <erinnesmom@...> wrote:

>

>

>

> One supplement that I include in ne's diet is this Complete Amino

> Acid<http://www.shsna.com/pages/complete_amino_acid.htm>,

> also made by Nutricia. The Tolerex does not give my daughter enough protein

> (in amino acid form) and, as the information I posted yesterday indicated,

> certain supplements have to be added because the Tolerex is not all

> inclusive. As I mentioned earlier, she does eat some animal protein (because

> she really enjoys it, but doesn't necessarily eat it every day); however,

> she would still have a protein deficit. She's been on it for almost a year

> and has done well with it.

>

> 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 Mon, Dec 29, 2008 at 7:53 PM, Amy <blueyedaze@...

> <mailto:blueyedaze%40aol.com> > wrote:

>

>> > Agreed!

>> >

>> > On Dec 29, 2008, at 6:49 PM, Lori G wrote:

>> >

>>> > > So, thank you and please continue to share information with us.

>> >

>> >

[Guest guest]

Ok sorry, I looked the word up online and understand now. :-P I thought

it was part of the word parent DOH! Thanks!

On 12/29/08 10:11 PM, " " <nicoleroberts@...> wrote:

>

>

>

> Hi Suzanne,

>

> I have been appreciating your AAD info. With this supplement, is it OK for

> adults? I¹m not sure what it means when theye say ³not for parenteral use²

> does that mean not for adults to take? I¹m 37 type 2, vegan diet.

>

> Thanks,

>

>

> On 12/29/08 8:11 PM, " Suzanne " <erinnesmom@...

> <mailto:erinnesmom%40gmail.com> > wrote:

>

>> >

>> >

>> >

>> > One supplement that I include in ne's diet is this Complete Amino

>> > Acid<http://www.shsna.com/pages/complete_amino_acid.htm>,

>> > also made by Nutricia. The Tolerex does not give my daughter enough protein

>> > (in amino acid form) and, as the information I posted yesterday indicated,

>> > certain supplements have to be added because the Tolerex is not all

>> > inclusive. As I mentioned earlier, she does eat some animal protein

>> (because

>> > she really enjoys it, but doesn't necessarily eat it every day); however,

>> > she would still have a protein deficit. She's been on it for almost a year

>> > and has done well with it.

>> >

>> > 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 Mon, Dec 29, 2008 at 7:53 PM, Amy <blueyedaze@...

>> <mailto:blueyedaze%40aol.com>

>> > <mailto:blueyedaze%40aol.com> > wrote:

>> >

>>>> >> > Agreed!

>>>> >> >

>>>> >> > On Dec 29, 2008, at 6:49 PM, Lori G wrote:

>>>> >> >

>>>>>> >>> > > So, thank you and please continue to share information with us.

>>>> >> >

>>>> >> >

[Guest guest]

" Parenteral use " means you can't use it in an IV to feed intravenously. That

would be a TPN or PPN IV formulation . You must consume this product

through the GI tract. When they stick that " er " in " Parental " is sure does

change the whole thing, doesn't it? ;-)

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 Mon, Dec 29, 2008 at 11:11 PM, <nicoleroberts@...

> wrote:

> Hi Suzanne,

>

> I have been appreciating your AAD info. With this supplement, is it OK for

> adults? I¹m not sure what it means when theye say ³not for parenteral use²

> does that mean not for adults to take? I¹m 37 type 2, vegan diet.

>

> Thanks,

>

>

> On 12/29/08 8:11 PM, " Suzanne "

<erinnesmom@...<erinnesmom%40gmail.com>>

> wrote:

>

> >

> >

> >

> > One supplement that I include in ne's diet is this Complete Amino

> > Acid<http://www.shsna.com/pages/complete_amino_acid.htm>,

> > also made by Nutricia. The Tolerex does not give my daughter enough

> protein

> > (in amino acid form) and, as the information I posted yesterday

> indicated,

> > certain supplements have to be added because the Tolerex is not all

> > inclusive. As I mentioned earlier, she does eat some animal protein

> (because

> > she really enjoys it, but doesn't necessarily eat it every day); however,

> > she would still have a protein deficit. She's been on it for almost a

> year

> > and has done well with it.

> >

> > 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 Mon, Dec 29, 2008 at 7:53 PM, Amy

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

> > <mailto:blueyedaze%40aol.com <blueyedaze%2540aol.com>> > wrote:

> >

> >> > Agreed!

> >> >

> >> > On Dec 29, 2008, at 6:49 PM, Lori G wrote:

> >> >

> >>> > > So, thank you and please continue to share information with us.

> >> >

> >> >

[Guest guest]

It looks like it requires a prescription, is that right? Do you have any

suggestions on what I could say to my dr (who knows absolutely nothing about

sma) to get her to help me with this? Sorry, it¹s really hard to find adult

drs who are helpful in the least!

On 12/29/08 10:17 PM, " Suzanne " <erinnesmom@...> wrote:

>

>

>

> " Parenteral use " means you can't use it in an IV to feed intravenously. That

> would be a TPN or PPN IV formulation . You must consume this product

> through the GI tract. When they stick that " er " in " Parental " is sure does

> change the whole thing, doesn't it? ;-)

>

> 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 Mon, Dec 29, 2008 at 11:11 PM, <nicoleroberts@...

> <mailto:nicoleroberts%40usfamily.net>

>> > wrote:

>

>> > Hi Suzanne,

>> >

>> > I have been appreciating your AAD info. With this supplement, is it OK for

>> > adults? I¹m not sure what it means when theye say ³not for parenteral use²

>> > does that mean not for adults to take? I¹m 37 type 2, vegan diet.

>> >

>> > Thanks,

>> >

>> >

>> > On 12/29/08 8:11 PM, " Suzanne " <erinnesmom@...

>> <mailto:erinnesmom%40gmail.com> <erinnesmom%40gmail.com>>

>> > wrote:

>> >

>>> > >

>>> > >

>>> > >

>>> > > One supplement that I include in ne's diet is this Complete Amino

>>> > > Acid<http://www.shsna.com/pages/complete_amino_acid.htm>,

>>> > > also made by Nutricia. The Tolerex does not give my daughter enough

>> > protein

>>> > > (in amino acid form) and, as the information I posted yesterday

>> > indicated,

>>> > > certain supplements have to be added because the Tolerex is not all

>>> > > inclusive. As I mentioned earlier, she does eat some animal protein

>> > (because

>>> > > she really enjoys it, but doesn't necessarily eat it every day);

>>> however,

>>> > > she would still have a protein deficit. She's been on it for almost a

>> > year

>>> > > and has done well with it.

>>> > >

>>> > > 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 Mon, Dec 29, 2008 at 7:53 PM, Amy <blueyedaze@...

>>> <mailto:blueyedaze%40aol.com> <blueyedaze%40aol.com>

>>> > > <mailto:blueyedaze%40aol.com <blueyedaze%2540aol.com>

>>> <mailto:blueyedaze%40aol.com & lt;blueyedaze%2540aol.com> > > wrote:

>>> > >

>>>>> > >> > Agreed!

>>>>> > >> >

>>>>> > >> > On Dec 29, 2008, at 6:49 PM, Lori G wrote:

>>>>> > >> >

>>>>>>> > >>> > > So, thank you and please continue to share information with

us.

>>>>> > >> >

>>>>> > >> >

[Guest guest]

Let me check with someone in the SMA Support community who tracks letters of

medical necessity and see what I can come up with.

But you can share with your doc the article from Dr. that I posted.

That should help some.

And while I'm at it, (and no, I don't own stock in this either!!) Dr.

Bach <http://www.doctorbach.com/> in NJ is considered one of THE leading SMA

docs in the world. I HIGHLY recommend his book, Management of Patients With

Neuromuscular

Disease.<http://www.us.elsevierhealth.com/product.jsp?isbn=1560536047>Chapter

3 is devoted to Nutrition (and on page 47, ne's diet in 2002 was

used as an example). I cannot recommend this book highly enough and it may

be what you need to help educate your doctor. I have purchased several

copies and given them to doctors whom I felt were truly interested in

learning about SMA and whom I thought we would have a long term relationship

with.

Dr Bach's website is FULL of helpful, useful information. Take a peek.

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 Mon, Dec 29, 2008 at 11:22 PM, <nicoleroberts@...

> wrote:

> It looks like it requires a prescription, is that right? Do you have any

> suggestions on what I could say to my dr (who knows absolutely nothing

> about

> sma) to get her to help me with this? Sorry, it¹s really hard to find adult

> drs who are helpful in the least!

>

> On 12/29/08 10:17 PM, " Suzanne "

<erinnesmom@...<erinnesmom%40gmail.com>>

> wrote:

>

> >

> >

> >

> > " Parenteral use " means you can't use it in an IV to feed intravenously.

> That

> > would be a TPN or PPN IV formulation . You must consume this product

> > through the GI tract. When they stick that " er " in " Parental " is sure

> does

> > change the whole thing, doesn't it? ;-)

> >

> > 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 Mon, Dec 29, 2008 at 11:11 PM, <

> nicoleroberts@... <nicoleroberts%40usfamily.net>

> > <mailto:nicoleroberts%40usfamily.net <nicoleroberts%2540usfamily.net>>

> >> > wrote:

> >

> >> > Hi Suzanne,

> >> >

> >> > I have been appreciating your AAD info. With this supplement, is it OK

> for

> >> > adults? I¹m not sure what it means when theye say ³not for parenteral

> use²

> >> > does that mean not for adults to take? I¹m 37 type 2, vegan diet.

> >> >

> >> > Thanks,

> >> >

> >> >

> >> > On 12/29/08 8:11 PM, " Suzanne "

<erinnesmom@...<erinnesmom%40gmail.com>

> >> <mailto:erinnesmom%40gmail.com <erinnesmom%2540gmail.com>> <erinnesmom%

> 40gmail.com>>

> >> > wrote:

> >> >

> >>> > >

> >>> > >

> >>> > >

> >>> > > One supplement that I include in ne's diet is this Complete

> Amino

> >>> > > Acid<http://www.shsna.com/pages/complete_amino_acid.htm>,

> >>> > > also made by Nutricia. The Tolerex does not give my daughter enough

> >> > protein

> >>> > > (in amino acid form) and, as the information I posted yesterday

> >> > indicated,

> >>> > > certain supplements have to be added because the Tolerex is not all

> >>> > > inclusive. As I mentioned earlier, she does eat some animal protein

> >> > (because

> >>> > > she really enjoys it, but doesn't necessarily eat it every day);

> >>> however,

> >>> > > she would still have a protein deficit. She's been on it for almost

> a

> >> > year

> >>> > > and has done well with it.

> >>> > >

> >>> > > 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 Mon, Dec 29, 2008 at 7:53 PM, Amy

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

> >>> <mailto:blueyedaze%40aol.com <blueyedaze%2540aol.com>> <blueyedaze%

> 40aol.com>

> >>> > > <mailto:blueyedaze%40aol.com <blueyedaze%2540aol.com> <blueyedaze%

> 2540aol.com>

> >>> <mailto:blueyedaze%40aol.com <blueyedaze%2540aol.com> & lt;blueyedaze%

> 2540aol.com> > > wrote:

> >>> > >

> >>>>> > >> > Agreed!

> >>>>> > >> >

> >>>>> > >> > On Dec 29, 2008, at 6:49 PM, Lori G wrote:

> >>>>> > >> >

> >>>>>>> > >>> > > So, thank you and please continue to share information

> with

> us.

> >>>>> > >> >

> >>>>> > >> >

[Guest guest]

> > >>>>> > >> >

> > >>>>>>> > >>> > > So, thank you and please continue to share

information

> > with

> > us.

> > >>>>> > >> >

> > >>>>> > >> >

[Guest guest]

Hi, I've been reading all the discusion about the amino acid diet and

I'm very interested. I do get tired during the day. I was not aware

that people with SMA have a harder time digesting meat and dairy

proteins. I have always ate as much meat and protein as possible

bacause my father thought it would give me more strength. Is this a

bad idea? I'm on Vivonex Pediatric feeding over night with 2 scoops

of Beneprotein and wanted to know if this is an amino acid diet? I

want to make sure I'm doing all I can to keep my strength up. Any

suggestions would be appreciated. Thanks,

> > >>>>> > >> >

> > >>>>>>> > >>> > > So, thank you and please continue to share

information

> > with

> > us.

> > >>>>> > >> >

> > >>>>> > >> >