Guest guest Posted December 27, 2008 Report Share Posted December 27, 2008 Thanks a lot, . It does help to know I'm not alone. On Dec 27, 2008, at 6:14 PM, sweetleo03 wrote: > I understand your frustration with suddenly losing your ability to > feed yourself - I lost a lot of my mobility after a lengthy hospital > stay few years ago. Have you tried drinking Boost or Ensure? I drink > one every night before bed to help with my weight. Sometimes I even > chug one or two in place of a meal if I'm crunched for time. This can > get pricey though, so I'd recommend getting a prescription if you go > with that route. I also drink a lot of Naked or Bolthouse Farms, > organic, highly concentrated fruit smoothies, which pack a lot of > calories and vitamins. They are also pretty filling and taste > awesome. Hang in there, you're not alone! It seems like all I can > handle these days are my mouse and joystick. I'm considering trying > out that amino acid diet in attempts to maintain what I do still have. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2008 Report Share Posted December 27, 2008 The Naked or Bolthouse Farms are both EXCELLENT juices to mix the Tolerex with as a smoothie, either with crushed ice or with rice milk, rice ice cream (I think it's Rice Dream?). The flavor of Tolerex is not the greatest, so whatever you could mask it with is great. Boost and Ensure are both milk-based formulas. Suzanne Jesus said, ' " I tell you the truth, when you refused to help the least of these, my brothers and sisters, you were refusing to help Me. " 25:45 <>< For the latest and greatest, visit: www.our-sma-angels.com/neRose On Sat, Dec 27, 2008 at 6:14 PM, sweetleo03 <sweetleo03@...> wrote: > Hey Amy, > > I understand your frustration with suddenly losing your ability to > feed yourself - I lost a lot of my mobility after a lengthy hospital > stay few years ago. Have you tried drinking Boost or Ensure? I drink > one every night before bed to help with my weight. Sometimes I even > chug one or two in place of a meal if I'm crunched for time. This can > get pricey though, so I'd recommend getting a prescription if you go > with that route. I also drink a lot of Naked or Bolthouse Farms, > organic, highly concentrated fruit smoothies, which pack a lot of > calories and vitamins. They are also pretty filling and taste > awesome. Hang in there, you're not alone! It seems like all I can > handle these days are my mouse and joystick. I'm considering trying > out that amino acid diet in attempts to maintain what I do still have. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 Yep -- is right. You have to double dillute the packet. It says to mix it with 220mls of liquid and you need to actually dillute it with 440-500mls. The reason for that is because of the lack of lean muscle mass in a person with SMA doesn't allow for " storage " of the protein. By dilluting it, and spreading it out over a longer period, it gives the body time to absorb to protein slowly, and utilize the protein efficiently. So if you use 2 packs a day, mixed with 900-1000mls of liquid, and drink it over a period of 12-14 hours, that is the most effective way help the body absorb the nutrients. The difference the AA diet has made in EVERYONE who uses it is nothing short of miraculous and the results (strength & energy) are quickly evident. There is a doctor here in Mich that was so impressed by the changes he saw in ne that he secured a grant to begin studying the AA diet in patients with SMA. The study should begin sometime this year. Suzanne Jesus said, ' " I tell you the truth, when you refused to help the least of these, my brothers and sisters, you were refusing to help Me. " 25:45 <>< For the latest and greatest, visit: www.our-sma-angels.com/neRose On Sun, Dec 28, 2008 at 2:11 AM, <ccoxcgc@...> wrote: > Danny uses a 40 oz mix of Juicy Juice Strawberry Kiwi and Sunny D > original flavor juice with 2 packets of tolerex which supplies 5 > drinks over a 2-day period. The key for him is for it to be really > cold, and he quickly follows each large sip with a bite of food. > Danny's always been a pretty picky eater, so if the taste of the > tolerex mix isn't too much for him, then anyone should be able to get > it down with no problem. > > If any of you do try the Amino Acid Diet/Tolerex, be sure that you > don't go by the packet directions for making it. It should be diluted > much more than the instructions say. Read the articles that were > posted by Suzanne or get more info from others who use it. The only > drawback is that the extra liquid intake means more frequent > urination, so he sometimes skips it if he'll be away from me for a > long stretch. If he skips drinking it for a day or two (if we are out > of town or on the road), he definitely feels a difference. I can't say > enough about how much it has helped Danny. You can really see the > difference between his pics in the photo section from 2003 and 2004 to > photos from this year...he is much healthier now. > > > > > > > > > Hey Amy, > > > > > > I understand your frustration with suddenly losing your ability to > > > feed yourself - I lost a lot of my mobility after a lengthy hospital > > > stay few years ago. Have you tried drinking Boost or Ensure? I drink > > > one every night before bed to help with my weight. Sometimes I even > > > chug one or two in place of a meal if I'm crunched for time. This can > > > get pricey though, so I'd recommend getting a prescription if you go > > > with that route. I also drink a lot of Naked or Bolthouse Farms, > > > organic, highly concentrated fruit smoothies, which pack a lot of > > > calories and vitamins. They are also pretty filling and taste > > > awesome. Hang in there, you're not alone! It seems like all I can > > > handle these days are my mouse and joystick. I'm considering trying > > > out that amino acid diet in attempts to maintain what I do still have. > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 This is my exact problem. I cannot drink that much fluid as I am away at work (leave at 5am and get home at 4 or 5pm). I limit my fluid intake so I do not have to use the restroom while I am at work. Is an AAD possible without the Tolerax? What would diet consist of? Thank you. Lori ________________________________ From: Suzanne <erinnesmom@...> Sent: Sunday, December 28, 2008 3:46:14 PM Subject: Re: Re: gtube vs. peg Yep -- is right. You have to double dillute the packet. It says to mix it with 220mls of liquid and you need to actually dillute it with 440-500mls. The reason for that is because of the lack of lean muscle mass in a person with SMA doesn't allow for " storage " of the protein. By dilluting it, and spreading it out over a longer period, it gives the body time to absorb to protein slowly, and utilize the protein efficiently. So if you use 2 packs a day, mixed with 900-1000mls of liquid, and drink it over a period of 12-14 hours, that is the most effective way help the body absorb the nutrients. The difference the AA diet has made in EVERYONE who uses it is nothing short of miraculous and the results (strength & energy) are quickly evident. There is a doctor here in Mich that was so impressed by the changes he saw in ne that he secured a grant to begin studying the AA diet in patients with SMA. The study should begin sometime this year. Suzanne Jesus said, ' " I tell you the truth, when you refused to help the least of these, my brothers and sisters, you were refusing to help Me. " 25:45 <>< For the latest and greatest, visit: www.our-sma- angels.com/ neRose On Sun, Dec 28, 2008 at 2:11 AM, <ccoxcgc (DOT) com> wrote: > Danny uses a 40 oz mix of Juicy Juice Strawberry Kiwi and Sunny D > original flavor juice with 2 packets of tolerex which supplies 5 > drinks over a 2-day period. The key for him is for it to be really > cold, and he quickly follows each large sip with a bite of food. > Danny's always been a pretty picky eater, so if the taste of the > tolerex mix isn't too much for him, then anyone should be able to get > it down with no problem. > > If any of you do try the Amino Acid Diet/Tolerex, be sure that you > don't go by the packet directions for making it. It should be diluted > much more than the instructions say. Read the articles that were > posted by Suzanne or get more info from others who use it. The only > drawback is that the extra liquid intake means more frequent > urination, so he sometimes skips it if he'll be away from me for a > long stretch. If he skips drinking it for a day or two (if we are out > of town or on the road), he definitely feels a difference. I can't say > enough about how much it has helped Danny. You can really see the > difference between his pics in the photo section from 2003 and 2004 to > photos from this year...he is much healthier now. > > > > > > > > > Hey Amy, > > > > > > I understand your frustration with suddenly losing your ability to > > > feed yourself - I lost a lot of my mobility after a lengthy hospital > > > stay few years ago. Have you tried drinking Boost or Ensure? I drink > > > one every night before bed to help with my weight. Sometimes I even > > > chug one or two in place of a meal if I'm crunched for time. This can > > > get pricey though, so I'd recommend getting a prescription if you go > > > with that route. I also drink a lot of Naked or Bolthouse Farms, > > > organic, highly concentrated fruit smoothies, which pack a lot of > > > calories and vitamins. They are also pretty filling and taste > > > awesome. Hang in there, you're not alone! It seems like all I can > > > handle these days are my mouse and joystick. I'm considering trying > > > out that amino acid diet in attempts to maintain what I do still have. > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 I was wondering about that too (a tolerex alternative) -- do you guys think a plant based protein would work for us? Or maybe a multi amino acid supplement? On 12/28/08 8:10 PM, " Lori G " <lorig713@...> wrote: > > > > This is my exact problem. I cannot drink that much fluid as I am away at work > (leave at 5am and get home at 4 or 5pm). I limit my fluid intake so I do not > have to use the restroom while I am at work. > > Is an AAD possible without the Tolerax? What would diet consist of? > > Thank you. > > Lori > > ________________________________ > From: Suzanne <erinnesmom@... <mailto:erinnesmom%40gmail.com> > > <mailto:%40> > Sent: Sunday, December 28, 2008 3:46:14 PM > Subject: Re: Re: gtube vs. peg > > Yep -- is right. You have to double dillute the packet. It says to mix > it with 220mls of liquid and you need to actually dillute it with > 440-500mls. The reason for that is because of the lack of lean muscle mass > in a person with SMA doesn't allow for " storage " of the protein. By > dilluting it, and spreading it out over a longer period, it gives the body > time to absorb to protein slowly, and utilize the protein efficiently. So if > you use 2 packs a day, mixed with 900-1000mls of liquid, and drink it over a > period of 12-14 hours, that is the most effective way help the body absorb > the nutrients. > > The difference the AA diet has made in EVERYONE who uses it is nothing short > of miraculous and the results (strength & energy) are quickly evident. > > There is a doctor here in Mich that was so impressed by the changes he saw > in ne that he secured a grant to begin studying the AA diet in patients > with SMA. The study should begin sometime this year. > > Suzanne > > Jesus said, ' " I tell you the truth, when you refused to help the least of > these, my brothers and sisters, you were refusing to help Me. " 25:45 > <>< > > For the latest and greatest, visit: www.our-sma- angels.com/ neRose > > On Sun, Dec 28, 2008 at 2:11 AM, <ccoxcgc (DOT) com> wrote: > >> > Danny uses a 40 oz mix of Juicy Juice Strawberry Kiwi and Sunny D >> > original flavor juice with 2 packets of tolerex which supplies 5 >> > drinks over a 2-day period. The key for him is for it to be really >> > cold, and he quickly follows each large sip with a bite of food. >> > Danny's always been a pretty picky eater, so if the taste of the >> > tolerex mix isn't too much for him, then anyone should be able to get >> > it down with no problem. >> > >> > If any of you do try the Amino Acid Diet/Tolerex, be sure that you >> > don't go by the packet directions for making it. It should be diluted >> > much more than the instructions say. Read the articles that were >> > posted by Suzanne or get more info from others who use it. The only >> > drawback is that the extra liquid intake means more frequent >> > urination, so he sometimes skips it if he'll be away from me for a >> > long stretch. If he skips drinking it for a day or two (if we are out >> > of town or on the road), he definitely feels a difference. I can't say >> > enough about how much it has helped Danny. You can really see the >> > difference between his pics in the photo section from 2003 and 2004 to >> > photos from this year...he is much healthier now. >> > >> > >> > >> > >>> > > >>>> > > > Hey Amy, >>>> > > > >>>> > > > I understand your frustration with suddenly losing your ability to >>>> > > > feed yourself - I lost a lot of my mobility after a lengthy hospital >>>> > > > stay few years ago. Have you tried drinking Boost or Ensure? I drink >>>> > > > one every night before bed to help with my weight. Sometimes I even >>>> > > > chug one or two in place of a meal if I'm crunched for time. This can >>>> > > > get pricey though, so I'd recommend getting a prescription if you go >>>> > > > with that route. I also drink a lot of Naked or Bolthouse Farms, >>>> > > > organic, highly concentrated fruit smoothies, which pack a lot of >>>> > > > calories and vitamins. They are also pretty filling and taste >>>> > > > awesome. Hang in there, you're not alone! It seems like all I can >>>> > > > handle these days are my mouse and joystick. I'm considering trying >>>> > > > out that amino acid diet in attempts to maintain what I do still have. >>>> > > > >>>> > > > >>>> > > > >>>> > > > >>>> > > > >>> > > >>> > > >>> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2008 Report Share Posted December 29, 2008 I don't know how much liquid you drink but there is another amino acid product that Bodzo told me about. It is a juice box like product called EO28 Splash. I was told that two a day " should " be enough for me. Suzanne On Dec 28, 2008, at 11:41 PM, wrote: > I was wondering about that too (a tolerex alternative) -- do you > guys think > a plant based protein would work for us? Or maybe a multi amino acid > supplement? > > On 12/28/08 8:10 PM, " Lori G " <lorig713@...> wrote: > > > > > > > > > This is my exact problem. I cannot drink that much fluid as I am > away at work > > (leave at 5am and get home at 4 or 5pm). I limit my fluid intake > so I do not > > have to use the restroom while I am at work. > > > > Is an AAD possible without the Tolerax? What would diet consist of? > > > > Thank you. > > > > Lori > > > > ________________________________ > > From: Suzanne <erinnesmom@... <mailto:erinnesmom%40gmail.com > > > > > <mailto:%40> > > Sent: Sunday, December 28, 2008 3:46:14 PM > > Subject: Re: Re: gtube vs. peg > > > > Yep -- is right. You have to double dillute the packet. It > says to mix > > it with 220mls of liquid and you need to actually dillute it with > > 440-500mls. The reason for that is because of the lack of lean > muscle mass > > in a person with SMA doesn't allow for " storage " of the protein. By > > dilluting it, and spreading it out over a longer period, it gives > the body > > time to absorb to protein slowly, and utilize the protein > efficiently. So if > > you use 2 packs a day, mixed with 900-1000mls of liquid, and drink > it over a > > period of 12-14 hours, that is the most effective way help the > body absorb > > the nutrients. > > > > The difference the AA diet has made in EVERYONE who uses it is > nothing short > > of miraculous and the results (strength & energy) are quickly > evident. > > > > There is a doctor here in Mich that was so impressed by the > changes he saw > > in ne that he secured a grant to begin studying the AA diet in > patients > > with SMA. The study should begin sometime this year. > > > > Suzanne > > > > Jesus said, ' " I tell you the truth, when you refused to help the > least of > > these, my brothers and sisters, you were refusing to help Me. " > 25:45 > > <>< > > > > For the latest and greatest, visit: www.our-sma- angels.com/ > neRose > > > > On Sun, Dec 28, 2008 at 2:11 AM, <ccoxcgc (DOT) com> wrote: > > > >> > Danny uses a 40 oz mix of Juicy Juice Strawberry Kiwi and Sunny D > >> > original flavor juice with 2 packets of tolerex which supplies 5 > >> > drinks over a 2-day period. The key for him is for it to be > really > >> > cold, and he quickly follows each large sip with a bite of food. > >> > Danny's always been a pretty picky eater, so if the taste of the > >> > tolerex mix isn't too much for him, then anyone should be able > to get > >> > it down with no problem. > >> > > >> > If any of you do try the Amino Acid Diet/Tolerex, be sure that > you > >> > don't go by the packet directions for making it. It should be > diluted > >> > much more than the instructions say. Read the articles that were > >> > posted by Suzanne or get more info from others who use it. The > only > >> > drawback is that the extra liquid intake means more frequent > >> > urination, so he sometimes skips it if he'll be away from me > for a > >> > long stretch. If he skips drinking it for a day or two (if we > are out > >> > of town or on the road), he definitely feels a difference. I > can't say > >> > enough about how much it has helped Danny. You can really see the > >> > difference between his pics in the photo section from 2003 and > 2004 to > >> > photos from this year...he is much healthier now. > >> > > >> > > >> > > >> > > >>> > > > >>>> > > > Hey Amy, > >>>> > > > > >>>> > > > I understand your frustration with suddenly losing your > ability to > >>>> > > > feed yourself - I lost a lot of my mobility after a > lengthy hospital > >>>> > > > stay few years ago. Have you tried drinking Boost or > Ensure? I drink > >>>> > > > one every night before bed to help with my weight. > Sometimes I even > >>>> > > > chug one or two in place of a meal if I'm crunched for > time. This can > >>>> > > > get pricey though, so I'd recommend getting a > prescription if you go > >>>> > > > with that route. I also drink a lot of Naked or Bolthouse > Farms, > >>>> > > > organic, highly concentrated fruit smoothies, which pack > a lot of > >>>> > > > calories and vitamins. They are also pretty filling and > taste > >>>> > > > awesome. Hang in there, you're not alone! It seems like > all I can > >>>> > > > handle these days are my mouse and joystick. I'm > considering trying > >>>> > > > out that amino acid diet in attempts to maintain what I > do still > have. > >>>> > > > > >>>> > > > > >>>> > > > > >>>> > > > > >>>> > > > > >>> > > > >>> > > > >>> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2008 Report Share Posted December 29, 2008 My husband and I both have the Mickey button tube and we love it. I will be honest, I had a nightmare situation when i was about 10 years old. They switched me from a normal G-tube to a mushroom type button. I don't remember the name of it but you had to stick like a stylus through the middle to collapse the mushroom and pull it out. Anyway, I had a horrible reaction to it. I was very young so I don't exactly remember what happened. I think the tube went between my stomach lining and my skin instead of into my stomach. I got a huge infection and was in horrible pain. i wouldn't even let my nurses touch it without screaming. I finally went into the ER. They gave me some sort of happy juice so I wouldn't feel it and changed it (I did see a pretty purple spider with a top hat. haha). Anyway, my paranoid father was convinced it was because it was a button and didn't let me change it for quite a few years. But I love the buttons now. It's no longer the mushroom thing. It's a balloon filled with water that keeps it in place. I was a teenager and very self conscious about the way I looked. I still try to look my best. The button is flush to the skin, or relatively flush, so I can wear sexy lingerie or wahtever without it being noticable. Also, when i did have the tube I was so self conscious about it showing that I would have the nurses pull it extremely taut inside my jeans which caused pain and several accidents where the nurse would unbutton my jeans and yank the tube out of my belly. Ouch. So a very simple answer is I highly recommend the Peg tube for fashion convenience and safety. Kemp > Danny uses a 40 oz mix of Juicy Juice Strawberry Kiwi and Sunny D > original flavor juice with 2 packets of tolerex which supplies 5 > drinks over a 2-day period. The key for him is for it to be really > cold, and he quickly follows each large sip with a bite of food. > Danny's always been a pretty picky eater, so if the taste of the > tolerex mix isn't too much for him, then anyone should be able to get > it down with no problem. > > If any of you do try the Amino Acid Diet/Tolerex, be sure that you > don't go by the packet directions for making it. It should be diluted > much more than the instructions say. Read the articles that were > posted by Suzanne or get more info from others who use it. The only > drawback is that the extra liquid intake means more frequent > urination, so he sometimes skips it if he'll be away from me for a > long stretch. If he skips drinking it for a day or two (if we are out > of town or on the road), he definitely feels a difference. I can't say > enough about how much it has helped Danny. You can really see the > difference between his pics in the photo section from 2003 and 2004 to > photos from this year...he is much healthier now. > > > > > > > > > Hey Amy, > > > > > > I understand your frustration with suddenly losing your ability to > > > feed yourself - I lost a lot of my mobility after a lengthy hospital > > > stay few years ago. Have you tried drinking Boost or Ensure? I drink > > > one every night before bed to help with my weight. Sometimes I even > > > chug one or two in place of a meal if I'm crunched for time. This can > > > get pricey though, so I'd recommend getting a prescription if you go > > > with that route. I also drink a lot of Naked or Bolthouse Farms, > > > organic, highly concentrated fruit smoothies, which pack a lot of > > > calories and vitamins. They are also pretty filling and taste > > > awesome. Hang in there, you're not alone! It seems like all I can > > > handle these days are my mouse and joystick. I'm considering trying > > > out that amino acid diet in attempts to maintain what I do still have. > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2008 Report Share Posted December 29, 2008 Hi Suzanne, You are correct in stating that EO28 Splash<http://www.neocate.com/aaa_neocate/703-neocate-products-E028-splash.html>\ is also an amino acid supplement in a palatable, juice box form. It is in the Neocate product line and is made by Nutricia North America. It is a product that was marketed for children and has 32% fat. It might be good for those who are looking to gain weight, and follow an amino acid diet, but don't want to consume the amount or recommended fluids that is suggested with the Tolerex. Suzanne W. 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 9:19 AM, Su_Ma_La <su_la@...> wrote: > > > I don't know how much liquid you drink but there is another amino acid > product that Bodzo told me about. It is a juice box like > product called EO28 Splash. I was told that two a day " should " be > enough for me. > > Suzanne > > > On Dec 28, 2008, at 11:41 PM, wrote: > > > I was wondering about that too (a tolerex alternative) -- do you > > guys think > > a plant based protein would work for us? Or maybe a multi amino acid > > supplement? > > > > On 12/28/08 8:10 PM, " Lori G " <lorig713@... <lorig713%40>> > wrote: > > > > > > > > > > > > > > This is my exact problem. I cannot drink that much fluid as I am > > away at work > > > (leave at 5am and get home at 4 or 5pm). I limit my fluid intake > > so I do not > > > have to use the restroom while I am at work. > > > > > > Is an AAD possible without the Tolerax? What would diet consist of? > > > > > > Thank you. > > > > > > Lori > > > > > > ________________________________ > > > From: Suzanne <erinnesmom@... <erinnesmom%40gmail.com><mailto: > erinnesmom%40gmail.com <erinnesmom%2540gmail.com> > > > > > > > <%40> <mailto: > %40 <%2540>> > > > Sent: Sunday, December 28, 2008 3:46:14 PM > > > Subject: Re: Re: gtube vs. peg > > > > > > Yep -- is right. You have to double dillute the packet. It > > says to mix > > > it with 220mls of liquid and you need to actually dillute it with > > > 440-500mls. The reason for that is because of the lack of lean > > muscle mass > > > in a person with SMA doesn't allow for " storage " of the protein. By > > > dilluting it, and spreading it out over a longer period, it gives > > the body > > > time to absorb to protein slowly, and utilize the protein > > efficiently. So if > > > you use 2 packs a day, mixed with 900-1000mls of liquid, and drink > > it over a > > > period of 12-14 hours, that is the most effective way help the > > body absorb > > > the nutrients. > > > > > > The difference the AA diet has made in EVERYONE who uses it is > > nothing short > > > of miraculous and the results (strength & energy) are quickly > > evident. > > > > > > There is a doctor here in Mich that was so impressed by the > > changes he saw > > > in ne that he secured a grant to begin studying the AA diet in > > patients > > > with SMA. The study should begin sometime this year. > > > > > > Suzanne > > > > > > Jesus said, ' " I tell you the truth, when you refused to help the > > least of > > > these, my brothers and sisters, you were refusing to help Me. " > > 25:45 > > > <>< > > > > > > For the latest and greatest, visit: www.our-sma- angels.com/ > > neRose > > > > > > On Sun, Dec 28, 2008 at 2:11 AM, <ccoxcgc (DOT) com> wrote: > > > > > >> > Danny uses a 40 oz mix of Juicy Juice Strawberry Kiwi and Sunny D > > >> > original flavor juice with 2 packets of tolerex which supplies 5 > > >> > drinks over a 2-day period. The key for him is for it to be > > really > > >> > cold, and he quickly follows each large sip with a bite of food. > > >> > Danny's always been a pretty picky eater, so if the taste of the > > >> > tolerex mix isn't too much for him, then anyone should be able > > to get > > >> > it down with no problem. > > >> > > > >> > If any of you do try the Amino Acid Diet/Tolerex, be sure that > > you > > >> > don't go by the packet directions for making it. It should be > > diluted > > >> > much more than the instructions say. Read the articles that were > > >> > posted by Suzanne or get more info from others who use it. The > > only > > >> > drawback is that the extra liquid intake means more frequent > > >> > urination, so he sometimes skips it if he'll be away from me > > for a > > >> > long stretch. If he skips drinking it for a day or two (if we > > are out > > >> > of town or on the road), he definitely feels a difference. I > > can't say > > >> > enough about how much it has helped Danny. You can really see the > > >> > difference between his pics in the photo section from 2003 and > > 2004 to > > >> > photos from this year...he is much healthier now. > > >> > > > >> > > > >> > > > >> > > > >>> > > > > >>>> > > > Hey Amy, > > >>>> > > > > > >>>> > > > I understand your frustration with suddenly losing your > > ability to > > >>>> > > > feed yourself - I lost a lot of my mobility after a > > lengthy hospital > > >>>> > > > stay few years ago. Have you tried drinking Boost or > > Ensure? I drink > > >>>> > > > one every night before bed to help with my weight. > > Sometimes I even > > >>>> > > > chug one or two in place of a meal if I'm crunched for > > time. This can > > >>>> > > > get pricey though, so I'd recommend getting a > > prescription if you go > > >>>> > > > with that route. I also drink a lot of Naked or Bolthouse > > Farms, > > >>>> > > > organic, highly concentrated fruit smoothies, which pack > > a lot of > > >>>> > > > calories and vitamins. They are also pretty filling and > > taste > > >>>> > > > awesome. Hang in there, you're not alone! It seems like > > all I can > > >>>> > > > handle these days are my mouse and joystick. I'm > > considering trying > > >>>> > > > out that amino acid diet in attempts to maintain what I > > do still > > have. > > >>>> > > > > > >>>> > > > > > >>>> > > > > > >>>> > > > > > >>>> > > > > > >>> > > > > >>> > > > > >>> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2008 Report Share Posted December 29, 2008 The button with the mushroom is the Bard button. I had the same thing happen to me. I think you meant to recommend the Mic-Key button, not the Peg tube. I love you, 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 Kemp Sent: Monday, December 29, 2008 12:02 PM Subject: Re: Re: gtube vs. peg My husband and I both have the Mickey button tube and we love it. I will be honest, I had a nightmare situation when i was about 10 years old. They switched me from a normal G-tube to a mushroom type button. I don't remember the name of it but you had to stick like a stylus through the middle to collapse the mushroom and pull it out. Anyway, I had a horrible reaction to it. I was very young so I don't exactly remember what happened. I think the tube went between my stomach lining and my skin instead of into my stomach. I got a huge infection and was in horrible pain. i wouldn't even let my nurses touch it without screaming. I finally went into the ER. They gave me some sort of happy juice so I wouldn't feel it and changed it (I did see a pretty purple spider with a top hat. haha). Anyway, my paranoid father was convinced it was because it was a button and didn't let me change it for quite a few years. But I love the buttons now. It's no longer the mushroom thing. It's a balloon filled with water that keeps it in place. I was a teenager and very self conscious about the way I looked. I still try to look my best. The button is flush to the skin, or relatively flush, so I can wear sexy lingerie or wahtever without it being noticable. Also, when i did have the tube I was so self conscious about it showing that I would have the nurses pull it extremely taut inside my jeans which caused pain and several accidents where the nurse would unbutton my jeans and yank the tube out of my belly. Ouch. So a very simple answer is I highly recommend the Peg tube for fashion convenience and safety. Kemp > Danny uses a 40 oz mix of Juicy Juice Strawberry Kiwi and Sunny D > original flavor juice with 2 packets of tolerex which supplies 5 > drinks over a 2-day period. The key for him is for it to be really > cold, and he quickly follows each large sip with a bite of food. > Danny's always been a pretty picky eater, so if the taste of the > tolerex mix isn't too much for him, then anyone should be able to get > it down with no problem. > > If any of you do try the Amino Acid Diet/Tolerex, be sure that you > don't go by the packet directions for making it. It should be diluted > much more than the instructions say. Read the articles that were > posted by Suzanne or get more info from others who use it. The only > drawback is that the extra liquid intake means more frequent > urination, so he sometimes skips it if he'll be away from me for a > long stretch. If he skips drinking it for a day or two (if we are out > of town or on the road), he definitely feels a difference. I can't say > enough about how much it has helped Danny. You can really see the > difference between his pics in the photo section from 2003 and 2004 to > photos from this year...he is much healthier now. > > > > > > > > > Hey Amy, > > > > > > I understand your frustration with suddenly losing your ability to > > > feed yourself - I lost a lot of my mobility after a lengthy hospital > > > stay few years ago. Have you tried drinking Boost or Ensure? I drink > > > one every night before bed to help with my weight. Sometimes I even > > > chug one or two in place of a meal if I'm crunched for time. This can > > > get pricey though, so I'd recommend getting a prescription if you go > > > with that route. I also drink a lot of Naked or Bolthouse Farms, > > > organic, highly concentrated fruit smoothies, which pack a lot of > > > calories and vitamins. They are also pretty filling and taste > > > awesome. Hang in there, you're not alone! It seems like all I can > > > handle these days are my mouse and joystick. I'm considering trying > > > out that amino acid diet in attempts to maintain what I do still have. > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2008 Report Share Posted December 29, 2008 Thank you. I will discuss this with our unit dietitian and I am thinking about making an appointment with a neurologist at the MDA Clinic (haven't been in years). Lori ________________________________ From: Suzanne <erinnesmom@...> Sent: Monday, December 29, 2008 3:33:51 PM Subject: Re: Re: gtube vs. peg Hi Suzanne, You are correct in stating that EO28 Splash<http://www.neocate. com/aaa_neocate/ 703-neocate- products- E028-splash. html>is also an amino acid supplement in a palatable, juice box form. It is in the Neocate product line and is made by Nutricia North America. It is a product that was marketed for children and has 32% fat. It might be good for those who are looking to gain weight, and follow an amino acid diet, but don't want to consume the amount or recommended fluids that is suggested with the Tolerex. Suzanne W. 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 9:19 AM, Su_Ma_La <su_lasbcglobal (DOT) net> wrote: > > > I don't know how much liquid you drink but there is another amino acid > product that Bodzo told me about. It is a juice box like > product called EO28 Splash. I was told that two a day " should " be > enough for me. > > Suzanne > > > On Dec 28, 2008, at 11:41 PM, wrote: > > > I was wondering about that too (a tolerex alternative) -- do you > > guys think > > a plant based protein would work for us? Or maybe a multi amino acid > > supplement? > > > > On 12/28/08 8:10 PM, " Lori G " <lorig713 (DOT) com <lorig713%40. com>> > wrote: > > > > > > > > > > > > > > This is my exact problem. I cannot drink that much fluid as I am > > away at work > > > (leave at 5am and get home at 4 or 5pm). I limit my fluid intake > > so I do not > > > have to use the restroom while I am at work. > > > > > > Is an AAD possible without the Tolerax? What would diet consist of? > > > > > > Thank you. > > > > > > Lori > > > > > > ____________ _________ _________ __ > > > From: Suzanne <erinnesmomgmail (DOT) com <erinnesmom% 40gmail.com> <mailto: > erinnesmom%40gmail. com <erinnesmom% 2540gmail. com> > > > > > > > @gro ups.com <% 40groups. com> <mailto: > %40g roups.com <% 2540groups. com>> > > > Sent: Sunday, December 28, 2008 3:46:14 PM > > > Subject: Re: Re: gtube vs. peg > > > > > > Yep -- is right. You have to double dillute the packet. It > > says to mix > > > it with 220mls of liquid and you need to actually dillute it with > > > 440-500mls. The reason for that is because of the lack of lean > > muscle mass > > > in a person with SMA doesn't allow for " storage " of the protein. By > > > dilluting it, and spreading it out over a longer period, it gives > > the body > > > time to absorb to protein slowly, and utilize the protein > > efficiently. So if > > > you use 2 packs a day, mixed with 900-1000mls of liquid, and drink > > it over a > > > period of 12-14 hours, that is the most effective way help the > > body absorb > > > the nutrients. > > > > > > The difference the AA diet has made in EVERYONE who uses it is > > nothing short > > > of miraculous and the results (strength & energy) are quickly > > evident. > > > > > > There is a doctor here in Mich that was so impressed by the > > changes he saw > > > in ne that he secured a grant to begin studying the AA diet in > > patients > > > with SMA. The study should begin sometime this year. > > > > > > Suzanne > > > > > > Jesus said, ' " I tell you the truth, when you refused to help the > > least of > > > these, my brothers and sisters, you were refusing to help Me. " > > 25:45 > > > <>< > > > > > > For the latest and greatest, visit: www.our-sma- angels.com/ > > neRose > > > > > > On Sun, Dec 28, 2008 at 2:11 AM, <ccoxcgc (DOT) com> wrote: > > > > > >> > Danny uses a 40 oz mix of Juicy Juice Strawberry Kiwi and Sunny D > > >> > original flavor juice with 2 packets of tolerex which supplies 5 > > >> > drinks over a 2-day period. The key for him is for it to be > > really > > >> > cold, and he quickly follows each large sip with a bite of food. > > >> > Danny's always been a pretty picky eater, so if the taste of the > > >> > tolerex mix isn't too much for him, then anyone should be able > > to get > > >> > it down with no problem. > > >> > > > >> > If any of you do try the Amino Acid Diet/Tolerex, be sure that > > you > > >> > don't go by the packet directions for making it. It should be > > diluted > > >> > much more than the instructions say. Read the articles that were > > >> > posted by Suzanne or get more info from others who use it. The > > only > > >> > drawback is that the extra liquid intake means more frequent > > >> > urination, so he sometimes skips it if he'll be away from me > > for a > > >> > long stretch. If he skips drinking it for a day or two (if we > > are out > > >> > of town or on the road), he definitely feels a difference. I > > can't say > > >> > enough about how much it has helped Danny. You can really see the > > >> > difference between his pics in the photo section from 2003 and > > 2004 to > > >> > photos from this year...he is much healthier now. > > >> > > > >> > > > >> > > > >> > > > >>> > > > > >>>> > > > Hey Amy, > > >>>> > > > > > >>>> > > > I understand your frustration with suddenly losing your > > ability to > > >>>> > > > feed yourself - I lost a lot of my mobility after a > > lengthy hospital > > >>>> > > > stay few years ago. Have you tried drinking Boost or > > Ensure? I drink > > >>>> > > > one every night before bed to help with my weight. > > Sometimes I even > > >>>> > > > chug one or two in place of a meal if I'm crunched for > > time. This can > > >>>> > > > get pricey though, so I'd recommend getting a > > prescription if you go > > >>>> > > > with that route. I also drink a lot of Naked or Bolthouse > > Farms, > > >>>> > > > organic, highly concentrated fruit smoothies, which pack > > a lot of > > >>>> > > > calories and vitamins. They are also pretty filling and > > taste > > >>>> > > > awesome. Hang in there, you're not alone! It seems like > > all I can > > >>>> > > > handle these days are my mouse and joystick. I'm > > considering trying > > >>>> > > > out that amino acid diet in attempts to maintain what I > > do still > > have. > > >>>> > > > > > >>>> > > > > > >>>> > > > > > >>>> > > > > > >>>> > > > > > >>> > > > > >>> > > > > >>> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2008 Report Share Posted December 29, 2008 Thank you. I will look into this as an alternative. Lori ________________________________ From: Su_Ma_La <su_la@...> Sent: Monday, December 29, 2008 8:19:32 AM Subject: Re: Re: gtube vs. peg I don't know how much liquid you drink but there is another amino acid product that Bodzo told me about. It is a juice box like product called EO28 Splash. I was told that two a day " should " be enough for me. Suzanne On Dec 28, 2008, at 11:41 PM, wrote: > I was wondering about that too (a tolerex alternative) -- do you > guys think > a plant based protein would work for us? Or maybe a multi amino acid > supplement? > > On 12/28/08 8:10 PM, " Lori G " <lorig713 (DOT) com> wrote: > > > > > > > > > This is my exact problem. I cannot drink that much fluid as I am > away at work > > (leave at 5am and get home at 4 or 5pm). I limit my fluid intake > so I do not > > have to use the restroom while I am at work. > > > > Is an AAD possible without the Tolerax? What would diet consist of? > > > > Thank you. > > > > Lori > > > > ____________ _________ _________ __ > > From: Suzanne <erinnesmomgmail (DOT) com <mailto:erinnesmom% 40gmail.com > > > > > @gro ups.com <mailto:% 40groups. com> > > Sent: Sunday, December 28, 2008 3:46:14 PM > > Subject: Re: Re: gtube vs. peg > > > > Yep -- is right. You have to double dillute the packet. It > says to mix > > it with 220mls of liquid and you need to actually dillute it with > > 440-500mls. The reason for that is because of the lack of lean > muscle mass > > in a person with SMA doesn't allow for " storage " of the protein. By > > dilluting it, and spreading it out over a longer period, it gives > the body > > time to absorb to protein slowly, and utilize the protein > efficiently. So if > > you use 2 packs a day, mixed with 900-1000mls of liquid, and drink > it over a > > period of 12-14 hours, that is the most effective way help the > body absorb > > the nutrients. > > > > The difference the AA diet has made in EVERYONE who uses it is > nothing short > > of miraculous and the results (strength & energy) are quickly > evident. > > > > There is a doctor here in Mich that was so impressed by the > changes he saw > > in ne that he secured a grant to begin studying the AA diet in > patients > > with SMA. The study should begin sometime this year. > > > > Suzanne > > > > Jesus said, ' " I tell you the truth, when you refused to help the > least of > > these, my brothers and sisters, you were refusing to help Me. " > 25:45 > > <>< > > > > For the latest and greatest, visit: www.our-sma- angels.com/ > neRose > > > > On Sun, Dec 28, 2008 at 2:11 AM, <ccoxcgc (DOT) com> wrote: > > > >> > Danny uses a 40 oz mix of Juicy Juice Strawberry Kiwi and Sunny D > >> > original flavor juice with 2 packets of tolerex which supplies 5 > >> > drinks over a 2-day period. The key for him is for it to be > really > >> > cold, and he quickly follows each large sip with a bite of food. > >> > Danny's always been a pretty picky eater, so if the taste of the > >> > tolerex mix isn't too much for him, then anyone should be able > to get > >> > it down with no problem. > >> > > >> > If any of you do try the Amino Acid Diet/Tolerex, be sure that > you > >> > don't go by the packet directions for making it. It should be > diluted > >> > much more than the instructions say. Read the articles that were > >> > posted by Suzanne or get more info from others who use it. The > only > >> > drawback is that the extra liquid intake means more frequent > >> > urination, so he sometimes skips it if he'll be away from me > for a > >> > long stretch. If he skips drinking it for a day or two (if we > are out > >> > of town or on the road), he definitely feels a difference. I > can't say > >> > enough about how much it has helped Danny. You can really see the > >> > difference between his pics in the photo section from 2003 and > 2004 to > >> > photos from this year...he is much healthier now. > >> > > >> > > >> > > >> > > >>> > > > >>>> > > > Hey Amy, > >>>> > > > > >>>> > > > I understand your frustration with suddenly losing your > ability to > >>>> > > > feed yourself - I lost a lot of my mobility after a > lengthy hospital > >>>> > > > stay few years ago. Have you tried drinking Boost or > Ensure? I drink > >>>> > > > one every night before bed to help with my weight. > Sometimes I even > >>>> > > > chug one or two in place of a meal if I'm crunched for > time. This can > >>>> > > > get pricey though, so I'd recommend getting a > prescription if you go > >>>> > > > with that route. I also drink a lot of Naked or Bolthouse > Farms, > >>>> > > > organic, highly concentrated fruit smoothies, which pack > a lot of > >>>> > > > calories and vitamins. They are also pretty filling and > taste > >>>> > > > awesome. Hang in there, you're not alone! It seems like > all I can > >>>> > > > handle these days are my mouse and joystick. I'm > considering trying > >>>> > > > out that amino acid diet in attempts to maintain what I > do still > have. > >>>> > > > > >>>> > > > > >>>> > > > > >>>> > > > > >>>> > > > > >>> > > > >>> > > > >>> > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.