Re: Unresolving swallowing/aspiration issues

[Guest guest]

One issue I had with the barium swallow study was getting in a position to

have the test performed. I was supposed to transfer into a seat so the camera

could capture the necessary images. Of course, sitting in their seat wasn't

an option for me and my wheelchair wasn't at the right level. We ultimately

raised my wheelchair on a platform, removed my tray and my mom held me

upright.

When the test was done, it was determined I couldn't swallow well (which I

already knew!). The report said I really needed a feeding tube. That was

more than a year ago and I have yet to follow the advice. My weight has

remained consistent at 40 pounds for as long as I can remember. I know I have

severe swallowing issues, but I also know I want to eat as long as I can.

So, that was my experience.

Bethany

In a message dated 12/7/2008 3:09:08 PM Eastern Standard Time,

lorig713@... writes:

Still having the swallowing/aspiratiStill havi Having a modified barium

swallow study on Wednesday. To those who have had this study, how did it go

for

you?

As you may recall, I usually have a period of swallowing problems after a

lung infection but this time it does not appear to be resolving. Blah! The

part I hate the most is having to wake up multiple times at night to help

me suction.

L

[Non-text portions of this message have been removed]

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[Guest guest]

I use Peptimen 1.0

Kimi

" We come to love not by finding a perfect person but by learning to see an

imperfect person perfectly " - San Keen

In a message dated 12/7/2008 6:59:02 P.M. Eastern Standard Time,

d-kemp@... writes:

I totally agree with everything you said Suzanne. Those of you who have

g-tubes, what kind of formula do you get?

Kemp

Director, OurGV Rewards

<_http://www.ourgvrewhttp://ww_ (http://www.ourgvrewards.com/) >

_http://www.ourgvrewhttp://w_ (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@...)

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From: _@groSMAfrie_ (mailto: )

[mailto:_@groSMAfrie_ (mailto: ) ] On

Behalf Of Suzanne

Sent: Sunday, December 07, 2008 2:40 PM

_@groSMAfrie_ (mailto: )

Subject: Re: Unresolving swallowing/aspiratiSubject:

Hi Bethany,

Just wanted to mention here that just because you get a feeding tube doesn't

mean you have to give up eating! ne got her tube because she too was

having difficulty swallowing and had a hard time getting enough nutrients in

to support growth and to sustain her when she was sick. She is on an

elemental/amino acid diet which means the protein in the formula is not

animal based. It is in a medium branched chain amino adic form. The thinking

on SMA and diet in the past 10 years or so has shown that most people with

SMA have a harder time breaking down animal based proteins and better

utilize proteins in a medium or simple branched chained forms.

The feeding tube and the amino acid diet has actually made ne stronger,

which improved her swallow and

supported her better health. The important thing to note is she *STILL

EATS*just about anything she wants. She eats for pleasure. I do allow

her to have

some animal protein, because she enjoys it, but I limit the quantity that

she takes in on any given day. I have found that too much animal based

protein causes ne to have night sweats, increase respirations and

increased heartrate. Other parents have seen the same things.

I know this way of thinking is relatively new, and some may think, " Well

I've survived this long without it, so I don't need it. " I simply want to

point out that there ARE other options, which don't require you to give up

something you enjoy.

I can't help but think that some of these scary scoli surgery stories might

have had better outcomes, had people been given choices, and proper

nutritional support while going through surgery and recovering post op.

Unfortunately, the knowledge just wasn't available at that time. (And

believe me, many of us STILL fight doctors to get them to go along with this

diet and what we KNOW works.) I think the reason why those of us who have

chosen to have our children undergo multiple scoli surgeries is because we

know their are supported optimially with good nutrition. How else could we

explain how these kids have scoli surgery and go home the same day or next

day, and return to school 4 or 5 days later?

I also like the fact that I know my daughter is getting 10-11 servings of

fruits and veges each and every day via her g-tube. ne didn't get her

tube until she was 4 yrs old and I regret not knowing about it or doing it

sooner. It has allowed her to have a " normal " growth process and be very,

very healthy. (ne is 11 1/2 yrs old, 5'6 " and 120lbs.)

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-For the latFor the la

On Sun, Dec 7, 2008 at 4:40 PM, <_Broadb515@..._

(mailto:Broadb515@...)

<mailto:Broadb515%mailto:Br> > wrote:

>

> One issue I had with the barium swallow study was getting in a position to

> have the test performed. I was supposed to transfer into a seat so the

> camera

> could capture the necessary images. Of course, sitting in their seat

wasn't

>

> an option for me and my wheelchair wasn't at the right level. We

ultimately

>

> raised my wheelchair on a platform, removed my tray and my mom held me

> upright.

>

> When the test was done, it was determined I couldn't swallow well (which I

> already knew!). The report said I really needed a feeding tube. That was

> more than a year ago and I have yet to follow the advice. My weight has

> remained consistent at 40 pounds for as long as I can remember. I know I

> have

> severe swallowing issues, but I also know I want to eat as long as I can.

>

> So, that was my experience.

>

> Bethany

>

> In a message dated 12/7/2008 3:09:08 PM Eastern Standard Time,

> _lorig713@..._ (mailto:lorig713@...)

<mailto:lorig713%mailto:lori> <lorig713%40.lor>

writes:

>

> Still having the swallowing/aspirati Still having the swallowing/am

> swallow study on Wednesday. To those who have had this study, how did it

go

> for

> you?

>

> As you may recall, I usually have a period of swallowing problems after a

> lung infection but this time it does not appear to be resolving. Blah! The

> part I hate the most is having to wake up multiple times at night to

> help

> me suction.

>

> L

>

> [Non-text portions of this message have been removed]

>

> ************ ************<WBR>**Make your life easier with all your f

> favorite sites in one place. Try it now.

> (

> _http://www.aol.http://www.http:/_ (http://www.aol.com/?optin=new-dp)

<_http://www.aol.http://www.http:/ & icid=icid=<WBR>aolc & <WBR>ncid=emlcnt<WBR>n_

(http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000)

010> & icid=aolcom40vaniti & ncid=emlcntaolncid=emlcnta

>

>

>

[Guest guest]

Lori,

ne has had a couple of swallow studies done and the best thing I can

tell you to do is to quickly get that barium out of your system before it

turns to cement. I would suggest to start using Miralax or a similar

medication the morning of the swallow study and keep taking it until you see

that the barium is gone from your stools. Barium can REALLY bind you up and

cause a whole 'nother set of problems.

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 7, 2008 at 3:08 PM, Lori G <lorig713@...> wrote:

> Still having the swallowing/aspiration issues. Having a modified barium

> swallow study on Wednesday. To those who have had this study, how did it go

> for you?

>

> As you may recall, I usually have a period of swallowing problems after a

> lung infection but this time it does not appear to be resolving. Blah! The

> part I hate the most is having to wake up multiple times at night to

> help me suction.

>

> L

>

>

[Guest guest]

Suzanne,

Thank you very much. I had no idea about that. I already have a problem with

that due to the Atropine drops.

Sent from my Verizon BlackBerry

Re: Unresolving swallowing/aspiration issues

Lori,

ne has had a couple of swallow studies done and the best thing I can

tell you to do is to quickly get that barium out of your system before it

turns to cement. I would suggest to start using Miralax or a similar

medication the morning of the swallow study and keep taking it until you see

that the barium is gone from your stools. Barium can REALLY bind you up and

cause a whole 'nother set of problems.

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 7, 2008 at 3:08 PM, Lori G <lorig713@...> wrote:

> Still having the swallowing/aspiration issues. Having a modified barium

> swallow study on Wednesday. To those who have had this study, how did it go

> for you?

>

> As you may recall, I usually have a period of swallowing problems after a

> lung infection but this time it does not appear to be resolving. Blah! The

> part I hate the most is having to wake up multiple times at night to

> help me suction.

>

> L

>

>

[Guest guest]

Hi!

Your experience is interesting to me. I can foresee a day coming when the

feeding tube is essential for me. Everyone who has one has told me it is

helpful and they should have had it sooner.

I understand I would still be able to eat via mouth.

I guess this is what I'm thinking...it's a little tricky to put into words,

but...

If I have a tube and the option of eating by mouth, I am unable to picture

myself waking up and saying, " I think I'll rely on my feeding tube today. " My

natural tendency as long as I can is going to be to want to eat food versus

insert nutrition. So, it is probably stubbornness on my part, but I'm

struggling with having an attachment installed that I'm going to be reluctant to

use.

Still, I know my time is coming when I'll must have it, so all information

is really useful.

Thanks,

Bethany

In a message dated 12/7/2008 5:39:55 PM Eastern Standard Time,

erinnesmom@... writes:

Hi Bethany,

Just wanted to mention here that just because you get a feeding tube doesn't

mean you have to give up eating! ne got her tube because she too was

having difficulty swallowing and had a hard time getting enough nutrients in

to support growth and to sustain her when she was sick. She is on an

elemental/amino acid diet which means the protein in the formula is not

animal based. It is in a medium branched chain amino adic form. The thinking

on SMA and diet in the past 10 years or so has shown that most people with

SMA have a harder time breaking down animal based proteins and better

utilize proteins in a medium or simple branched chained forms.

The feeding tube and the amino acid diet has actually made ne stronger,

which improved her swallow and

supported her better health. The important thing to note is she *STILL

EATS*just about anything she wants. She eats for pleasure. I do allow

her to have

some animal protein, because she enjoys it, but I limit the quantity that

she takes in on any given day. I have found that too much animal based

protein causes ne to have night sweats, increase respirations and

increased heartrate. Other parents have seen the same things.

I know this way of thinking is relatively new, and some may think, " Well

I've survived this long without it, so I don't need it. " I simply want to

point out that there ARE other options, which don't require you to give up

something you enjoy.

I can't help but think that some of these scary scoli surgery stories might

have had better outcomes, had people been given choices, and proper

nutritional support while going through surgery and recovering post op.

Unfortunately, the knowledge just wasn't available at that time. (And

believe me, many of us STILL fight doctors to get them to go along with this

diet and what we KNOW works.) I think the reason why those of us who have

chosen to have our children undergo multiple scoli surgeries is because we

know their are supported optimially with good nutrition. How else could we

explain how these kids have scoli surgery and go home the same day or next

day, and return to school 4 or 5 days later?

I also like the fact that I know my daughter is getting 10-11 servings of

fruits and veges each and every day via her g-tube. ne didn't get her

tube until she was 4 yrs old and I regret not knowing about it or doing it

sooner. It has allowed her to have a " normal " growth process and be very,

very healthy. (ne is 11 1/2 yrs old, 5'6 " and 120lbs.)

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-For the latFor the la

On Sun, Dec 7, 2008 at 4:40 PM, <_Broadb515@..._

(mailto:Broadb515@...) > wrote:

>

> One issue I had with the barium swallow study was getting in a position to

> have the test performed. I was supposed to transfer into a seat so the

> camera

> could capture the necessary images. Of course, sitting in their seat wasn't

>

> an option for me and my wheelchair wasn't at the right level. We ultimately

>

> raised my wheelchair on a platform, removed my tray and my mom held me

> upright.

>

> When the test was done, it was determined I couldn't swallow well (which I

> already knew!). The report said I really needed a feeding tube. That was

> more than a year ago and I have yet to follow the advice. My weight has

> remained consistent at 40 pounds for as long as I can remember. I know I

> have

> severe swallowing issues, but I also know I want to eat as long as I can.

>

> So, that was my experience.

>

> Bethany

>

> In a message dated 12/7/2008 3:09:08 PM Eastern Standard Time,

> _lorig713@..._ (mailto:lorig713@...) <lorig713%40.lor>

writes:

>

> Still having the swallowing/aspirati Still having the swallowing/as

> swallow study on Wednesday. To those who have had this study, how did it go

> for

> you?

>

> As you may recall, I usually have a period of swallowing problems after a

> lung infection but this time it does not appear to be resolving. Blah! The

> part I hate the most is having to wake up multiple times at night to

> help

> me suction.

>

> L

>

> [Non-text portions of this message have been removed]

>

> ************ ************<WBR>**Make your life easier with all your f

> favorite sites in one place. Try it now.

> (

>

_http://www.aol.http://www.http:/ & icid=icid=<WBR>aolc & <WBR>ncid=emlcnt<WBR>ncid_

(http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000010)

)

>

>

>

[Guest guest]

It is an awful side effect, that's for sure. You can try prune juice,

Miralax, Senokot, ....any laxative that works for you. You will initially

see " gray paste " in the toilet. Keep up with the laxative until the gray is

gone. And drink even more water than you usually do, to flush it out. It is

awful stuff to get rid of --- literally glue in your intestines! I wish they

could come up with another contrast material for people who are already

having motility issues. The only positive thing is that it takes much less

barium for a swallow study than it does for a lower GI !!

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 7, 2008 at 4:08 PM, Lori <lorig713@...> wrote:

> Suzanne,

>

> Thank you very much. I had no idea about that. I already have a problem

> with that due to the Atropine drops.

>

>

> Sent from my Verizon BlackBerry

>

> Re: Unresolving swallowing/aspiration issues

>

>

> Lori,

>

> ne has had a couple of swallow studies done and the best thing I can

> tell you to do is to quickly get that barium out of your system before it

> turns to cement. I would suggest to start using Miralax or a similar

> medication the morning of the swallow study and keep taking it until you

> see

> that the barium is gone from your stools. Barium can REALLY bind you up and

>

> cause a whole 'nother set of problems.

>

> 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 7, 2008 at 3:08 PM, Lori G

<lorig713@...<lorig713%40>>

> wrote:

>

> > Still having the swallowing/aspiration issues. Having a modified barium

> > swallow study on Wednesday. To those who have had this study, how did it

> go

> > for you?

> >

> > As you may recall, I usually have a period of swallowing problems after a

>

> > lung infection but this time it does not appear to be resolving. Blah!

> The

> > part I hate the most is having to wake up multiple times at night to

>

> > help me suction.

> >

> > L

> >

> >

[Guest guest]

Ok, thank you again!

Sent from my Verizon BlackBerry

Re: Unresolving swallowing/aspiration issues

>

>

> Lori,

>

> ne has had a couple of swallow studies done and the best thing I can

> tell you to do is to quickly get that barium out of your system before it

> turns to cement. I would suggest to start using Miralax or a similar

> medication the morning of the swallow study and keep taking it until you

> see

> that the barium is gone from your stools. Barium can REALLY bind you up and

>

> cause a whole 'nother set of problems.

>

> 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 7, 2008 at 3:08 PM, Lori G

<lorig713@...<lorig713%40>>

> wrote:

>

> > Still having the swallowing/aspiration issues. Having a modified barium

> > swallow study on Wednesday. To those who have had this study, how did it

> go

> > for you?

> >

> > As you may recall, I usually have a period of swallowing problems after a

>

> > lung infection but this time it does not appear to be resolving. Blah!

> The

> > part I hate the most is having to wake up multiple times at night to

>

> > help me suction.

> >

> > L

> >

> >

[Guest guest]

Thank you very much! I am anticipating some positioning issues but will be

with be and he'll know just what to do. I'll let you all know how it goes.

Sent from my Verizon BlackBerry

Re: Unresolving swallowing/aspiration issues

One issue I had with the barium swallow study was getting in a position to

have the test performed. I was supposed to transfer into a seat so the camera

could capture the necessary images. Of course, sitting in their seat wasn't

an option for me and my wheelchair wasn't at the right level. We ultimately

raised my wheelchair on a platform, removed my tray and my mom held me

upright.

When the test was done, it was determined I couldn't swallow well (which I

already knew!). The report said I really needed a feeding tube. That was

more than a year ago and I have yet to follow the advice. My weight has

remained consistent at 40 pounds for as long as I can remember. I know I have

severe swallowing issues, but I also know I want to eat as long as I can.

So, that was my experience.

Bethany

In a message dated 12/7/2008 3:09:08 PM Eastern Standard Time,

lorig713@... writes:

Still having the swallowing/aspiratiStill havi Having a modified barium

swallow study on Wednesday. To those who have had this study, how did it go

for

you?

As you may recall, I usually have a period of swallowing problems after a

lung infection but this time it does not appear to be resolving. Blah! The

part I hate the most is having to wake up multiple times at night to help

me suction.

L

[Non-text portions of this message have been removed]

**************Make your life easier with all your friends, email, and

favorite sites in one place. Try it now.

(http://www.aol.com/?optin=new-dp & icid=aolcom40vanity & ncid=emlcntaolcom00000010)

[Guest guest]

Hi Bethany,

Just wanted to mention here that just because you get a feeding tube doesn't

mean you have to give up eating! ne got her tube because she too was

having difficulty swallowing and had a hard time getting enough nutrients in

to support growth and to sustain her when she was sick. She is on an

elemental/amino acid diet which means the protein in the formula is not

animal based. It is in a medium branched chain amino adic form. The thinking

on SMA and diet in the past 10 years or so has shown that most people with

SMA have a harder time breaking down animal based proteins and better

utilize proteins in a medium or simple branched chained forms.

The feeding tube and the amino acid diet has actually made ne stronger,

which improved her swallow and

supported her better health. The important thing to note is she *STILL

EATS*just about anything she wants. She eats for pleasure. I do allow

her to have

some animal protein, because she enjoys it, but I limit the quantity that

she takes in on any given day. I have found that too much animal based

protein causes ne to have night sweats, increase respirations and

increased heartrate. Other parents have seen the same things.

I know this way of thinking is relatively new, and some may think, " Well

I've survived this long without it, so I don't need it. " I simply want to

point out that there ARE other options, which don't require you to give up

something you enjoy.

I can't help but think that some of these scary scoli surgery stories might

have had better outcomes, had people been given choices, and proper

nutritional support while going through surgery and recovering post op.

Unfortunately, the knowledge just wasn't available at that time. (And

believe me, many of us STILL fight doctors to get them to go along with this

diet and what we KNOW works.) I think the reason why those of us who have

chosen to have our children undergo multiple scoli surgeries is because we

know their are supported optimially with good nutrition. How else could we

explain how these kids have scoli surgery and go home the same day or next

day, and return to school 4 or 5 days later?

I also like the fact that I know my daughter is getting 10-11 servings of

fruits and veges each and every day via her g-tube. ne didn't get her

tube until she was 4 yrs old and I regret not knowing about it or doing it

sooner. It has allowed her to have a " normal " growth process and be very,

very healthy. (ne is 11 1/2 yrs old, 5'6 " and 120lbs.)

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 7, 2008 at 4:40 PM, <Broadb515@...> wrote:

>

> One issue I had with the barium swallow study was getting in a position to

> have the test performed. I was supposed to transfer into a seat so the

> camera

> could capture the necessary images. Of course, sitting in their seat wasn't

>

> an option for me and my wheelchair wasn't at the right level. We ultimately

>

> raised my wheelchair on a platform, removed my tray and my mom held me

> upright.

>

> When the test was done, it was determined I couldn't swallow well (which I

> already knew!). The report said I really needed a feeding tube. That was

> more than a year ago and I have yet to follow the advice. My weight has

> remained consistent at 40 pounds for as long as I can remember. I know I

> have

> severe swallowing issues, but I also know I want to eat as long as I can.

>

> So, that was my experience.

>

> Bethany

>

> In a message dated 12/7/2008 3:09:08 PM Eastern Standard Time,

> lorig713@... <lorig713%40> writes:

>

> Still having the swallowing/aspiratiStill havi Having a modified barium

> swallow study on Wednesday. To those who have had this study, how did it go

> for

> you?

>

> As you may recall, I usually have a period of swallowing problems after a

> lung infection but this time it does not appear to be resolving. Blah! The

> part I hate the most is having to wake up multiple times at night to

> help

> me suction.

>

> L

>

>

[Guest guest]

It really is horrible stuff! If you have a G-tube, you can pull most of it

back out with a syringe.

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 07, 2008 1:28 PM

Subject: Re: Unresolving swallowing/aspiration issues

It is an awful side effect, that's for sure. You can try prune juice,

Miralax, Senokot, ....any laxative that works for you. You will initially

see " gray paste " in the toilet. Keep up with the laxative until the gray is

gone. And drink even more water than you usually do, to flush it out. It is

awful stuff to get rid of --- literally glue in your intestines! I wish they

could come up with another contrast material for people who are already

having motility issues. The only positive thing is that it takes much less

barium for a swallow study than it does for a lower GI !!

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 7, 2008 at 4:08 PM, Lori <lorig713@...

<mailto:lorig713%40> > wrote:

> Suzanne,

>

> Thank you very much. I had no idea about that. I already have a problem

> with that due to the Atropine drops.

>

>

> Sent from my Verizon BlackBerry

>

> Re: Unresolving swallowing/aspiration issues

>

>

> Lori,

>

> ne has had a couple of swallow studies done and the best thing I can

> tell you to do is to quickly get that barium out of your system before it

> turns to cement. I would suggest to start using Miralax or a similar

> medication the morning of the swallow study and keep taking it until you

> see

> that the barium is gone from your stools. Barium can REALLY bind you up

and

>

> cause a whole 'nother set of problems.

>

> 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 7, 2008 at 3:08 PM, Lori G <lorig713@...

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

> wrote:

>

> > Still having the swallowing/aspiration issues. Having a modified barium

> > swallow study on Wednesday. To those who have had this study, how did it

> go

> > for you?

> >

> > As you may recall, I usually have a period of swallowing problems after

a

>

> > lung infection but this time it does not appear to be resolving. Blah!

> The

> > part I hate the most is having to wake up multiple times at night

to

>

> > help me suction.

> >

> > L

> >

> >

[Guest guest]

You can still eat by mouth and have additional nutrition through a tube.

That's what my wife does and that's what I did for years, before I

completely lost my ability to swallow.

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 Broadb515@...

Sent: Sunday, December 07, 2008 1:41 PM

Subject: Re: Unresolving swallowing/aspiration issues

One issue I had with the barium swallow study was getting in a position to

have the test performed. I was supposed to transfer into a seat so the

camera

could capture the necessary images. Of course, sitting in their seat wasn't

an option for me and my wheelchair wasn't at the right level. We ultimately

raised my wheelchair on a platform, removed my tray and my mom held me

upright.

When the test was done, it was determined I couldn't swallow well (which I

already knew!). The report said I really needed a feeding tube. That was

more than a year ago and I have yet to follow the advice. My weight has

remained consistent at 40 pounds for as long as I can remember. I know I

have

severe swallowing issues, but I also know I want to eat as long as I can.

So, that was my experience.

Bethany

In a message dated 12/7/2008 3:09:08 PM Eastern Standard Time,

lorig713@... <mailto:lorig713%40> writes:

Still having the swallowing/aspiratiStill havi Having a modified barium

swallow study on Wednesday. To those who have had this study, how did it go

for

you?

As you may recall, I usually have a period of swallowing problems after a

lung infection but this time it does not appear to be resolving. Blah! The

part I hate the most is having to wake up multiple times at night to

help

me suction.

L

[Guest guest]

I totally agree with everything you said Suzanne. Those of you who have

g-tubes, what kind of formula do you get?

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 07, 2008 2:40 PM

Subject: Re: Unresolving swallowing/aspiration issues

Hi Bethany,

Just wanted to mention here that just because you get a feeding tube doesn't

mean you have to give up eating! ne got her tube because she too was

having difficulty swallowing and had a hard time getting enough nutrients in

to support growth and to sustain her when she was sick. She is on an

elemental/amino acid diet which means the protein in the formula is not

animal based. It is in a medium branched chain amino adic form. The thinking

on SMA and diet in the past 10 years or so has shown that most people with

SMA have a harder time breaking down animal based proteins and better

utilize proteins in a medium or simple branched chained forms.

The feeding tube and the amino acid diet has actually made ne stronger,

which improved her swallow and

supported her better health. The important thing to note is she *STILL

EATS*just about anything she wants. She eats for pleasure. I do allow

her to have

some animal protein, because she enjoys it, but I limit the quantity that

she takes in on any given day. I have found that too much animal based

protein causes ne to have night sweats, increase respirations and

increased heartrate. Other parents have seen the same things.

I know this way of thinking is relatively new, and some may think, " Well

I've survived this long without it, so I don't need it. " I simply want to

point out that there ARE other options, which don't require you to give up

something you enjoy.

I can't help but think that some of these scary scoli surgery stories might

have had better outcomes, had people been given choices, and proper

nutritional support while going through surgery and recovering post op.

Unfortunately, the knowledge just wasn't available at that time. (And

believe me, many of us STILL fight doctors to get them to go along with this

diet and what we KNOW works.) I think the reason why those of us who have

chosen to have our children undergo multiple scoli surgeries is because we

know their are supported optimially with good nutrition. How else could we

explain how these kids have scoli surgery and go home the same day or next

day, and return to school 4 or 5 days later?

I also like the fact that I know my daughter is getting 10-11 servings of

fruits and veges each and every day via her g-tube. ne didn't get her

tube until she was 4 yrs old and I regret not knowing about it or doing it

sooner. It has allowed her to have a " normal " growth process and be very,

very healthy. (ne is 11 1/2 yrs old, 5'6 " and 120lbs.)

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 7, 2008 at 4:40 PM, <Broadb515@...

<mailto:Broadb515%40aol.com> > wrote:

>

> One issue I had with the barium swallow study was getting in a position to

> have the test performed. I was supposed to transfer into a seat so the

> camera

> could capture the necessary images. Of course, sitting in their seat

wasn't

>

> an option for me and my wheelchair wasn't at the right level. We

ultimately

>

> raised my wheelchair on a platform, removed my tray and my mom held me

> upright.

>

> When the test was done, it was determined I couldn't swallow well (which I

> already knew!). The report said I really needed a feeding tube. That was

> more than a year ago and I have yet to follow the advice. My weight has

> remained consistent at 40 pounds for as long as I can remember. I know I

> have

> severe swallowing issues, but I also know I want to eat as long as I can.

>

> So, that was my experience.

>

> Bethany

>

> In a message dated 12/7/2008 3:09:08 PM Eastern Standard Time,

> lorig713@... <mailto:lorig713%40> <lorig713%40>

writes:

>

> Still having the swallowing/aspiratiStill havi Having a modified barium

> swallow study on Wednesday. To those who have had this study, how did it

go

> for

> you?

>

> As you may recall, I usually have a period of swallowing problems after a

> lung infection but this time it does not appear to be resolving. Blah! The

> part I hate the most is having to wake up multiple times at night to

> help

> me suction.

>

> L

>

>

[Guest guest]

How do you get her fruits and veges by a feeding tube?

On 12/7/08 4:39 PM, " Suzanne " <erinnesmom@...> wrote:

>

>

>

> Hi Bethany,

>

> Just wanted to mention here that just because you get a feeding tube doesn't

> mean you have to give up eating! ne got her tube because she too was

> having difficulty swallowing and had a hard time getting enough nutrients in

> to support growth and to sustain her when she was sick. She is on an

> elemental/amino acid diet which means the protein in the formula is not

> animal based. It is in a medium branched chain amino adic form. The thinking

> on SMA and diet in the past 10 years or so has shown that most people with

> SMA have a harder time breaking down animal based proteins and better

> utilize proteins in a medium or simple branched chained forms.

>

> The feeding tube and the amino acid diet has actually made ne stronger,

> which improved her swallow and

> supported her better health. The important thing to note is she *STILL

> EATS*just about anything she wants. She eats for pleasure. I do allow

> her to have

> some animal protein, because she enjoys it, but I limit the quantity that

> she takes in on any given day. I have found that too much animal based

> protein causes ne to have night sweats, increase respirations and

> increased heartrate. Other parents have seen the same things.

>

> I know this way of thinking is relatively new, and some may think, " Well

> I've survived this long without it, so I don't need it. " I simply want to

> point out that there ARE other options, which don't require you to give up

> something you enjoy.

>

> I can't help but think that some of these scary scoli surgery stories might

> have had better outcomes, had people been given choices, and proper

> nutritional support while going through surgery and recovering post op.

> Unfortunately, the knowledge just wasn't available at that time. (And

> believe me, many of us STILL fight doctors to get them to go along with this

> diet and what we KNOW works.) I think the reason why those of us who have

> chosen to have our children undergo multiple scoli surgeries is because we

> know their are supported optimially with good nutrition. How else could we

> explain how these kids have scoli surgery and go home the same day or next

> day, and return to school 4 or 5 days later?

>

> I also like the fact that I know my daughter is getting 10-11 servings of

> fruits and veges each and every day via her g-tube. ne didn't get her

> tube until she was 4 yrs old and I regret not knowing about it or doing it

> sooner. It has allowed her to have a " normal " growth process and be very,

> very healthy. (ne is 11 1/2 yrs old, 5'6 " and 120lbs.)

>

> 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 7, 2008 at 4:40 PM, <Broadb515@...

> <mailto:Broadb515%40aol.com> > wrote:

>

>> >

>> > One issue I had with the barium swallow study was getting in a position to

>> > have the test performed. I was supposed to transfer into a seat so the

>> > camera

>> > could capture the necessary images. Of course, sitting in their seat wasn't

>> >

>> > an option for me and my wheelchair wasn't at the right level. We ultimately

>> >

>> > raised my wheelchair on a platform, removed my tray and my mom held me

>> > upright.

>> >

>> > When the test was done, it was determined I couldn't swallow well (which I

>> > already knew!). The report said I really needed a feeding tube. That was

>> > more than a year ago and I have yet to follow the advice. My weight has

>> > remained consistent at 40 pounds for as long as I can remember. I know I

>> > have

>> > severe swallowing issues, but I also know I want to eat as long as I can.

>> >

>> > So, that was my experience.

>> >

>> > Bethany

>> >

>> > In a message dated 12/7/2008 3:09:08 PM Eastern Standard Time,

>> > lorig713@... <mailto:lorig713%40> <lorig713%40>

>> writes:

>> >

>> > Still having the swallowing/aspiratiStill havi Having a modified barium

>> > swallow study on Wednesday. To those who have had this study, how did it go

>> > for

>> > you?

>> >

>> > As you may recall, I usually have a period of swallowing problems after a

>> > lung infection but this time it does not appear to be resolving. Blah! The

>> > part I hate the most is having to wake up multiple times at night to

>> > help

>> > me suction.

>> >

>> > L

>> >

>> >

[Guest guest]

The two most commonly used formula by those who follow the aminol

acid/elemental diet protocol are Vivonex (pediatric) or Tolerex (adult).

Both are/were made by Novartis, which was recently bought out by Nestle.

Tolerex:

http://www.nestle-nutrition.com/products/Product.aspx?ProductId=bc535404-a19e-4c\

6f-8558-90eaf6a5556f

Vivonex:

http://www.nestle-nutrition.com/Products/Product.aspx?ProductId=badb3399-aac3-43\

f6-9ade-b195a63d0b71

When ne was 4-10 yrs old, she was on Vivonex. Now she is on Tolerex. The

main difference is fat content.

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 7, 2008 at 6:58 PM, <d-kemp@...> wrote:

> I totally agree with everything you said Suzanne. Those of you who have

> g-tubes, what kind of formula do you get?

>

> 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 07, 2008 2:40 PM

> <%40>

> Subject: Re: Unresolving swallowing/aspiration issues

>

> Hi Bethany,

>

> Just wanted to mention here that just because you get a feeding tube

> doesn't

> mean you have to give up eating! ne got her tube because she too was

> having difficulty swallowing and had a hard time getting enough nutrients

> in

> to support growth and to sustain her when she was sick. She is on an

> elemental/amino acid diet which means the protein in the formula is not

> animal based. It is in a medium branched chain amino adic form. The

> thinking

> on SMA and diet in the past 10 years or so has shown that most people with

> SMA have a harder time breaking down animal based proteins and better

> utilize proteins in a medium or simple branched chained forms.

>

> The feeding tube and the amino acid diet has actually made ne stronger,

> which improved her swallow and

> supported her better health. The important thing to note is she *STILL

> EATS*just about anything she wants. She eats for pleasure. I do allow

> her to have

> some animal protein, because she enjoys it, but I limit the quantity that

> she takes in on any given day. I have found that too much animal based

> protein causes ne to have night sweats, increase respirations and

> increased heartrate. Other parents have seen the same things.

>

> I know this way of thinking is relatively new, and some may think, " Well

> I've survived this long without it, so I don't need it. " I simply want to

> point out that there ARE other options, which don't require you to give up

> something you enjoy.

>

> I can't help but think that some of these scary scoli surgery stories might

> have had better outcomes, had people been given choices, and proper

> nutritional support while going through surgery and recovering post op.

> Unfortunately, the knowledge just wasn't available at that time. (And

> believe me, many of us STILL fight doctors to get them to go along with

> this

> diet and what we KNOW works.) I think the reason why those of us who have

> chosen to have our children undergo multiple scoli surgeries is because we

> know their are supported optimially with good nutrition. How else could we

> explain how these kids have scoli surgery and go home the same day or next

> day, and return to school 4 or 5 days later?

>

> I also like the fact that I know my daughter is getting 10-11 servings of

> fruits and veges each and every day via her g-tube. ne didn't get her

> tube until she was 4 yrs old and I regret not knowing about it or doing it

> sooner. It has allowed her to have a " normal " growth process and be very,

> very healthy. (ne is 11 1/2 yrs old, 5'6 " and 120lbs.)

>

> 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 7, 2008 at 4:40 PM, <Broadb515@... <Broadb515%40aol.com>

> <mailto:Broadb515%40aol.com <Broadb515%2540aol.com>> > wrote:

>

> >

> > One issue I had with the barium swallow study was getting in a position

> to

> > have the test performed. I was supposed to transfer into a seat so the

> > camera

> > could capture the necessary images. Of course, sitting in their seat

> wasn't

> >

> > an option for me and my wheelchair wasn't at the right level. We

> ultimately

> >

> > raised my wheelchair on a platform, removed my tray and my mom held me

> > upright.

> >

> > When the test was done, it was determined I couldn't swallow well (which

> I

> > already knew!). The report said I really needed a feeding tube. That was

> > more than a year ago and I have yet to follow the advice. My weight has

> > remained consistent at 40 pounds for as long as I can remember. I know I

> > have

> > severe swallowing issues, but I also know I want to eat as long as I can.

> >

> > So, that was my experience.

> >

> > Bethany

> >

> > In a message dated 12/7/2008 3:09:08 PM Eastern Standard Time,

> > lorig713@... <lorig713%40>

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

> <lorig713%40>

> writes:

> >

> > Still having the swallowing/aspiratiStill havi Having a modified barium

> > swallow study on Wednesday. To those who have had this study, how did it

> go

> > for

> > you?

> >

> > As you may recall, I usually have a period of swallowing problems after a

> > lung infection but this time it does not appear to be resolving. Blah!

> The

> > part I hate the most is having to wake up multiple times at night to

> > help

> > me suction.

> >

> > L

> >

> >

[Guest guest]

What is the benefit of having a barium study? I mean, it seems like I would

know if I were aspirating and unable to eat enough on my own to need a tube,

but is there something they can learn from a barium study to make swallowing

better? I just don¹t understand the positive purpose of the test.

On 12/7/08 6:48 PM, " " <BracinKnee@...> wrote:

>

>

>

>

> Hey Lori:

>

> Another thing to watch out for, since you are having trouble swallowing.? Here

> in Ohio, during a swallow study, if you aspirate the barium, you are awarded a

> " free " (NOT) trip to ICU for 2 to 3 days, no matter if you cough it out right

> away.? Good luck.? MJ no longer has to have them since she has a tube.? They

> do the study's by shooting the barium into her tube, but we cheat now so she

> doesn't have to go to ICU.? LOL!? Good luck!

>

>

> caregiver to MJ, 20, SMA type 1

>

> http://www.our-sma-angels.com/Margaret/ - MJ's website

> http://www.our-sma-angels.com/b4sma - MJ's organization

>

> " Far away in the sunshine are my highest aspirations.

> I may not reach them, but I can look up and see their beauty,

> believe in them, and try to follow where they lead. "

> ~Louisa May Alcott~

>

>

[Guest guest]

I either use stage 2 babyfoods or I make them. I steam spinach and other

dark greens, and another batch is the yellow/orange veges and the last batch

is tropical fruits. I use a food processor and/or a blender and blend the

heck out of them. Whatever I can get fresh at the fruit/vege market. If

thoroughly blended and mixed with enough water/juice, I have no problem

getting them through the g tube.

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 7, 2008 at 8:40 PM,

<nicoleroberts@...>wrote:

> How do you get her fruits and veges by a feeding tube?

>

>

> On 12/7/08 4:39 PM, " Suzanne "

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

> wrote:

>

> >

> >

> >

> > Hi Bethany,

> >

> > Just wanted to mention here that just because you get a feeding tube

> doesn't

> > mean you have to give up eating! ne got her tube because she too was

> > having difficulty swallowing and had a hard time getting enough nutrients

> in

> > to support growth and to sustain her when she was sick. She is on an

> > elemental/amino acid diet which means the protein in the formula is not

> > animal based. It is in a medium branched chain amino adic form. The

> thinking

> > on SMA and diet in the past 10 years or so has shown that most people

> with

> > SMA have a harder time breaking down animal based proteins and better

> > utilize proteins in a medium or simple branched chained forms.

> >

> > The feeding tube and the amino acid diet has actually made ne

> stronger,

> > which improved her swallow and

> > supported her better health. The important thing to note is she *STILL

> > EATS*just about anything she wants. She eats for pleasure. I do allow

> > her to have

> > some animal protein, because she enjoys it, but I limit the quantity that

> > she takes in on any given day. I have found that too much animal based

> > protein causes ne to have night sweats, increase respirations and

> > increased heartrate. Other parents have seen the same things.

> >

> > I know this way of thinking is relatively new, and some may think, " Well

> > I've survived this long without it, so I don't need it. " I simply want to

> > point out that there ARE other options, which don't require you to give

> up

> > something you enjoy.

> >

> > I can't help but think that some of these scary scoli surgery stories

> might

> > have had better outcomes, had people been given choices, and proper

> > nutritional support while going through surgery and recovering post op.

> > Unfortunately, the knowledge just wasn't available at that time. (And

> > believe me, many of us STILL fight doctors to get them to go along with

> this

> > diet and what we KNOW works.) I think the reason why those of us who have

> > chosen to have our children undergo multiple scoli surgeries is because

> we

> > know their are supported optimially with good nutrition. How else could

> we

> > explain how these kids have scoli surgery and go home the same day or

> next

> > day, and return to school 4 or 5 days later?

> >

> > I also like the fact that I know my daughter is getting 10-11 servings of

> > fruits and veges each and every day via her g-tube. ne didn't get her

> > tube until she was 4 yrs old and I regret not knowing about it or doing

> it

> > sooner. It has allowed her to have a " normal " growth process and be very,

> > very healthy. (ne is 11 1/2 yrs old, 5'6 " and 120lbs.)

> >

> > 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 7, 2008 at 4:40 PM, <Broadb515@... <Broadb515%40aol.com>

> > <mailto:Broadb515%40aol.com <Broadb515%2540aol.com>> > wrote:

> >

> >> >

> >> > One issue I had with the barium swallow study was getting in a

> position to

> >> > have the test performed. I was supposed to transfer into a seat so the

> >> > camera

> >> > could capture the necessary images. Of course, sitting in their seat

> wasn't

> >> >

> >> > an option for me and my wheelchair wasn't at the right level. We

> ultimately

> >> >

> >> > raised my wheelchair on a platform, removed my tray and my mom held me

> >> > upright.

> >> >

> >> > When the test was done, it was determined I couldn't swallow well

> (which I

> >> > already knew!). The report said I really needed a feeding tube. That

> was

> >> > more than a year ago and I have yet to follow the advice. My weight

> has

> >> > remained consistent at 40 pounds for as long as I can remember. I know

> I

> >> > have

> >> > severe swallowing issues, but I also know I want to eat as long as I

> can.

> >> >

> >> > So, that was my experience.

> >> >

> >> > Bethany

> >> >

> >> > In a message dated 12/7/2008 3:09:08 PM Eastern Standard Time,

> >> > lorig713@... <lorig713%40> <mailto:

> lorig713%40 <lorig713%2540>> <lorig713%40>

> >> writes:

> >> >

> >> > Still having the swallowing/aspiratiStill havi Having a modified

> barium

> >> > swallow study on Wednesday. To those who have had this study, how did

> it go

> >> > for

> >> > you?

> >> >

> >> > As you may recall, I usually have a period of swallowing problems

> after a

> >> > lung infection but this time it does not appear to be resolving. Blah!

> The

> >> > part I hate the most is having to wake up multiple times at night

> to

> >> > help

> >> > me suction.

> >> >

> >> > L

> >> >

> >> >

[Guest guest]

I asked the speech therapist if there were some strategies or exercises that

would help me. She said a MBS would show exactly what was going on. Only at that

point, could she recommend a particular plan of care.

L

Sent from my Verizon BlackBerry

Re: Re: Unresolving swallowing/aspiration issues

What is the benefit of having a barium study? I mean, it seems like I would

know if I were aspirating and unable to eat enough on my own to need a tube,

but is there something they can learn from a barium study to make swallowing

better? I just don¹t understand the positive purpose of the test.

On 12/7/08 6:48 PM, " " <BracinKnee@...> wrote:

>

>

>

>

> Hey Lori:

>

> Another thing to watch out for, since you are having trouble swallowing.? Here

> in Ohio, during a swallow study, if you aspirate the barium, you are awarded a

> " free " (NOT) trip to ICU for 2 to 3 days, no matter if you cough it out right

> away.? Good luck.? MJ no longer has to have them since she has a tube.? They

> do the study's by shooting the barium into her tube, but we cheat now so she

> doesn't have to go to ICU.? LOL!? Good luck!

>

>

> caregiver to MJ, 20, SMA type 1

>

> http://www.our-sma-angels.com/Margaret/ - MJ's website

> http://www.our-sma-angels.com/b4sma - MJ's organization

>

> " Far away in the sunshine are my highest aspirations.

> I may not reach them, but I can look up and see their beauty,

> believe in them, and try to follow where they lead. "

> ~Louisa May Alcott~

>

>

[Guest guest]

Ughhh! That trip I can do without. I will try to be careful. We will have my

trusty portable suction machine handy.

Lori

Sent from my Verizon BlackBerry

Re: Unresolving swallowing/aspiration issues

Hey Lori:

Another thing to watch out for, since you are having trouble swallowing.? Here

in Ohio, during a swallow study, if you aspirate the barium, you are awarded a

" free " (NOT) trip to ICU for 2 to 3 days, no matter if you cough it out right

away.? Good luck.? MJ no longer has to have them since she has a tube.? They do

the study's by shooting the barium into her tube, but we cheat now so she

doesn't have to go to ICU.? LOL!? Good luck!

caregiver to MJ, 20, SMA type 1

http://www.our-sma-angels.com/Margaret/ - MJ's website

http://www.our-sma-angels.com/b4sma - MJ's organization

" Far away in the sunshine are my highest aspirations.

I may not reach them, but I can look up and see their beauty,

believe in them, and try to follow where they lead. "

~Louisa May Alcott~

[Guest guest]

Actually, Bethany, you can have the tube put in ..... and not use it for the

time being. It is better to have the tube put in when you are healthy and

not compromised, than to wait until it is a dire need. I made that mistake

with ne and I regret it.

Some people olnly use the tube when they are ill and too sick to eat, or are

having trouble staying hydrated.

And if you are not a fan of eating veges, or you know you just don't get in

the required number of fruit and vege servings each day, you can use the

tube just for that.

And a " button " is quite small --- not any bigger than your navel. I'm

speaking of a Mic-key, which is what ne has. When she swims, you cannot

even tell that she has a button under her bathing suit. A Mic-key has a

removable " tail " that comes off when you are not using the tube.

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 7, 2008 at 9:19 PM, <Broadb515@...> wrote:

>

> Hi!

>

> Your experience is interesting to me. I can foresee a day coming when the

> feeding tube is essential for me. Everyone who has one has told me it is

> helpful and they should have had it sooner.

>

> I understand I would still be able to eat via mouth.

>

> I guess this is what I'm thinking...it's a little tricky to put into words,

>

> but...

>

> If I have a tube and the option of eating by mouth, I am unable to picture

> myself waking up and saying, " I think I'll rely on my feeding tube today. "

> My

> natural tendency as long as I can is going to be to want to eat food versus

>

> insert nutrition. So, it is probably stubbornness on my part, but I'm

> struggling with having an attachment installed that I'm going to be

> reluctant to

> use.

>

> Still, I know my time is coming when I'll must have it, so all information

> is really useful.

>

> Thanks,

> Bethany

>

> In a message dated 12/7/2008 5:39:55 PM Eastern Standard Time,

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

>

> Hi Bethany,

>

> Just wanted to mention here that just because you get a feeding tube

> doesn't

> mean you have to give up eating! ne got her tube because she too was

> having difficulty swallowing and had a hard time getting enough nutrients

> in

> to support growth and to sustain her when she was sick. She is on an

> elemental/amino acid diet which means the protein in the formula is not

> animal based. It is in a medium branched chain amino adic form. The

> thinking

> on SMA and diet in the past 10 years or so has shown that most people with

> SMA have a harder time breaking down animal based proteins and better

> utilize proteins in a medium or simple branched chained forms.

>

> The feeding tube and the amino acid diet has actually made ne stronger,

> which improved her swallow and

> supported her better health. The important thing to note is she *STILL

> EATS*just about anything she wants. She eats for pleasure. I do allow

> her to have

> some animal protein, because she enjoys it, but I limit the quantity that

> she takes in on any given day. I have found that too much animal based

> protein causes ne to have night sweats, increase respirations and

> increased heartrate. Other parents have seen the same things.

>

> I know this way of thinking is relatively new, and some may think, " Well

> I've survived this long without it, so I don't need it. " I simply want to

> point out that there ARE other options, which don't require you to give up

> something you enjoy.

>

> I can't help but think that some of these scary scoli surgery stories might

> have had better outcomes, had people been given choices, and proper

> nutritional support while going through surgery and recovering post op.

> Unfortunately, the knowledge just wasn't available at that time. (And

> believe me, many of us STILL fight doctors to get them to go along with

> this

> diet and what we KNOW works.) I think the reason why those of us who have

> chosen to have our children undergo multiple scoli surgeries is because we

> know their are supported optimially with good nutrition. How else could we

> explain how these kids have scoli surgery and go home the same day or next

> day, and return to school 4 or 5 days later?

>

> I also like the fact that I know my daughter is getting 10-11 servings of

> fruits and veges each and every day via her g-tube. ne didn't get her

> tube until she was 4 yrs old and I regret not knowing about it or doing it

> sooner. It has allowed her to have a " normal " growth process and be very,

> very healthy. (ne is 11 1/2 yrs old, 5'6 " and 120lbs.)

>

> 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-For the latFor the la

>

> On Sun, Dec 7, 2008 at 4:40 PM, <_Broadb515@... <_Broadb515%40aol.Bro>_

>

> (mailto:Broadb515@... <Broadb515%40aol.com>) > wrote:

>

> >

> > One issue I had with the barium swallow study was getting in a position

> to

> > have the test performed. I was supposed to transfer into a seat so the

> > camera

> > could capture the necessary images. Of course, sitting in their seat

> wasn't

> >

> > an option for me and my wheelchair wasn't at the right level. We

> ultimately

> >

> > raised my wheelchair on a platform, removed my tray and my mom held me

> > upright.

> >

> > When the test was done, it was determined I couldn't swallow well (which

> I

> > already knew!). The report said I really needed a feeding tube. That was

> > more than a year ago and I have yet to follow the advice. My weight has

> > remained consistent at 40 pounds for as long as I can remember. I know I

> > have

> > severe swallowing issues, but I also know I want to eat as long as I can.

> >

> > So, that was my experience.

> >

> > Bethany

> >

> > In a message dated 12/7/2008 3:09:08 PM Eastern Standard Time,

> > _lorig713@... <_lorig713%40.lor>_

(mailto:lorig713@...<lorig713%40>)

> <lorig713%40.lor>

> writes:

> >

> > Still having the swallowing/aspirati Still having the swallowing/as

> > swallow study on Wednesday. To those who have had this study, how did it

> go

> > for

> > you?

> >

> > As you may recall, I usually have a period of swallowing problems after a

> > lung infection but this time it does not appear to be resolving. Blah!

> The

> > part I hate the most is having to wake up multiple times at night to

> > help

> > me suction.

> >

> > L

> >

> >

[Guest guest]

I got a g-tube 10 years ago and it was the best decision I ever made. I

still eat my mouth but it's nice not have to rely on just that for my

necessary calories. I no longer have to get off my bipap to take meds when

I'm sick, I can pull everything out of my stomach instead of throwing up

and aspirating, and have a nice safely net if I don't feel like eating.

& Ivy- service dog extraordinaire

24 y/o, SMA I/II

www.k94life.org

At 07:36 PM 12/7/2008, you wrote:

>6h. Re: Unresolving swallowing/aspiration issues

> Posted by: " Suzanne " erinnesmom@... mom2erinne

> Date: Sun Dec 7, 2008 2:39 pm ((PST))

>

>Hi Bethany,

>

>Just wanted to mention here that just because you get a feeding tube doesn't

>mean you have to give up eating! ne got her tube because she too was

>having difficulty swallowing and had a hard time getting enough nutrients in

>to support growth and to sustain her when she was sick. She is on an

>elemental/amino acid diet which means the protein in the formula is not

>animal based. It is in a medium branched chain amino adic form. The thinking

>on SMA and diet in the past 10 years or so has shown that most people with

>SMA have a harder time breaking down animal based proteins and better

>utilize proteins in a medium or simple branched chained forms.

>

>The feeding tube and the amino acid diet has actually made ne stronger,

>which improved her swallow and

>supported her better health. The important thing to note is she *STILL

>EATS*just about anything she wants. She eats for pleasure. I do allow

>her to have

>some animal protein, because she enjoys it, but I limit the quantity that

>she takes in on any given day. I have found that too much animal based

>protein causes ne to have night sweats, increase respirations and

>increased heartrate. Other parents have seen the same things.

>

>I know this way of thinking is relatively new, and some may think, " Well

>I've survived this long without it, so I don't need it. " I simply want to

>point out that there ARE other options, which don't require you to give up

>something you enjoy.

>

>I can't help but think that some of these scary scoli surgery stories might

>have had better outcomes, had people been given choices, and proper

>nutritional support while going through surgery and recovering post op.

>Unfortunately, the knowledge just wasn't available at that time. (And

>believe me, many of us STILL fight doctors to get them to go along with this

>diet and what we KNOW works.) I think the reason why those of us who have

>chosen to have our children undergo multiple scoli surgeries is because we

>know their are supported optimially with good nutrition. How else could we

>explain how these kids have scoli surgery and go home the same day or next

>day, and return to school 4 or 5 days later?

>

>I also like the fact that I know my daughter is getting 10-11 servings of

>fruits and veges each and every day via her g-tube. ne didn't get her

>tube until she was 4 yrs old and I regret not knowing about it or doing it

>sooner. It has allowed her to have a " normal " growth process and be very,

>very healthy. (ne is 11 1/2 yrs old, 5'6 " and 120lbs.)

>

>Suzanne

[Guest guest]

i had this exam few months ago and surprisingly it went smoothly,

barium went down easily without stopping anywhere.

love & light

Patie

http://patie80.multiply.com

http://lilithfromearth.livejournal.com

http://patie.tripod.com

[Guest guest]

That's good news. Thanks.

Sent from my Verizon BlackBerry

Re: Unresolving swallowing/aspiration issues

i had this exam few months ago and surprisingly it went smoothly,

barium went down easily without stopping anywhere.

love & light

Patie

http://patie80.multiply.com

http://lilithfromearth.livejournal.com

http://patie.tripod.com

[Guest guest]

My 15 year old daughter has SMA II.  She is considering a g-tube but has many

questions.  We would appreciate any input.

how long and involved is the procedure

what is the recovery time

what types of tubes are available

can you see the tube through clothing

Any pros and cons are helpful.  Thanks.

Kathy

>6h. Re: Unresolving swallowing/aspirati on issues

> Posted by: " Suzanne " erinnesmomgmail (DOT) com mom2erinne

> Date: Sun Dec 7, 2008 2:39 pm ((PST))

>

>Hi Bethany,

>

>Just wanted to mention here that just because you get a feeding tube doesn't

>mean you have to give up eating! ne got her tube because she too was

>having difficulty swallowing and had a hard time getting enough nutrients in

>to support growth and to sustain her when she was sick. She is on an

>elemental/amino acid diet which means the protein in the formula is not

>animal based. It is in a medium branched chain amino adic form. The thinking

>on SMA and diet in the past 10 years or so has shown that most people with

>SMA have a harder time breaking down animal based proteins and better

>utilize proteins in a medium or simple branched chained forms.

>

>The feeding tube and the amino acid diet has actually made ne stronger,

>which improved her swallow and

>supported her better health. The important thing to note is she *STILL

>EATS*just about anything she wants. She eats for pleasure. I do allow

>her to have

>some animal protein, because she enjoys it, but I limit the quantity that

>she takes in on any given day. I have found that too much animal based

>protein causes ne to have night sweats, increase respirations and

>increased heartrate. Other parents have seen the same things.

>

>I know this way of thinking is relatively new, and some may think, " Well

>I've survived this long without it, so I don't need it. " I simply want to

>point out that there ARE other options, which don't require you to give up

>something you enjoy.

>

>I can't help but think that some of these scary scoli surgery stories might

>have had better outcomes, had people been given choices, and proper

>nutritional support while going through surgery and recovering post op.

>Unfortunately, the knowledge just wasn't available at that time. (And

>believe me, many of us STILL fight doctors to get them to go along with this

>diet and what we KNOW works.) I think the reason why those of us who have

>chosen to have our children undergo multiple scoli surgeries is because we

>know their are supported optimially with good nutrition. How else could we

>explain how these kids have scoli surgery and go home the same day or next

>day, and return to school 4 or 5 days later?

>

>I also like the fact that I know my daughter is getting 10-11 servings of

>fruits and veges each and every day via her g-tube. ne didn't get her

>tube until she was 4 yrs old and I regret not knowing about it or doing it

>sooner. It has allowed her to have a " normal " growth process and be very,

>very healthy. (ne is 11 1/2 yrs old, 5'6 " and 120lbs.)

>

>Suzanne