Guest guest Posted June 21, 1999 Report Share Posted June 21, 1999 try? Jonah >> > > > > >Date: Fri, 16 Jul 1999 14:01:28 -0400 >> > > > > > >> > > > > > >> > > > > > >> > > > > >Hi , >> > > > > > >> > > > > >I am so happy to hear that Jonah is doing better and gaining >> >weight. >> > > >What >> > > > > >kinds of changes have you made to his treatment that have had this >> > > > > >wonderful change? By the way, how are you doing? You have had a >> >rough >> > > >go >> > > > > >> > > > > >of >> > > > > >it in the last few months with all of his setbacks. I hope things >> >are >> > > > > >getting easier for you as well. Take care and good to hear from you >> > > > > again. >> > > > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 1999 Report Share Posted June 24, 1999 I'm sorry , I made a note to myself and meant to put it in my draft folder so I wouldn't forget to reread all of this stuff about this formula and think if we should try it. Then I accidently hit the send button instead. Sorry. Re: Jonah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 1999 Report Share Posted June 24, 1999 I'm sorry , I made a note to myself and meant to put it in my draft folder so I wouldn't forget to reread all of this stuff about this formula and think if we should try it. Then I accidently hit the send button instead. Sorry. Re: Jonah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 1999 Report Share Posted June 26, 1999 On this formula, So many things look and sound so good to me for us to use and then I notice the added glutamine or glutamic acid and I have to forget it. Whenever I had the added glutamine I got suicidally depressed. I guess I can't process it. So I am afraid to give it to the kids since whatever we have is genetic. So thank you for taking the time and effort to actually print the infor right off the package . S. Re: Jonah >> > >> > --------------------------- ONElist Sponsor ---------------------------- >> > >> > ONElist: your connection to online communities. >> > >> > ------------------------------------------------------------------------ >> > Brought to you by www.imdn.org - an on-line support group for those >>affected by mitochondrial disease. >> >>--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 1999 Report Share Posted July 17, 1999 Hi , Jonah is now on a formula called Vivonex Pediatric ans higher doses of carnitine.The formula is doing wonders for him,it is the first one that has worked.Apparently it is a substitute for TPN but for oral or gtube feeds.Also, his the assault on his brain from his high sodium was so dramatic that when he brain was healing it " kicked in " in areas that were otherwise dormant perhaps.This is a common phenomenon among brain injuries, especially in youn children.This is according to what I've been reading on the subject.I am just so grateful.He is a beautiful sight to behold.How are you?What have you been up to? > >Reply-To: Mitoonelist >To: " Mito List " <mitoonelist> >Subject: Jonah >Date: Fri, 16 Jul 1999 14:01:28 -0400 > > > >Hi , > >I am so happy to hear that Jonah is doing better and gaining weight. What >kinds of changes have you made to his treatment that have had this >wonderful change? By the way, how are you doing? You have had a rough go >of >it in the last few months with all of his setbacks. I hope things are >getting easier for you as well. Take care and good to hear from you again. > > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 1999 Report Share Posted August 4, 1999 - Please share Jonah's diagnosis with me. We have been evaluating carnitine carrying formula for our Complex-3 deficient child but haven't begun yet. Any details on diagnosis and results of treatment you could share? Thx - Hairston > Jonah > >Date: Fri, 16 Jul 1999 14:01:28 -0400 > > > > > > > >Hi , > > > >I am so happy to hear that Jonah is doing better and gaining weight. What > >kinds of changes have you made to his treatment that have had this > >wonderful change? By the way, how are you doing? You have had a rough go > > >of > >it in the last few months with all of his setbacks. I hope things are > >getting easier for you as well. Take care and good to hear from you > again. > > > > > > > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 1999 Report Share Posted August 4, 1999 , Your comments of brain assault causing new areas in the brain to open up hit me like a brick. I wonder if this is what happened when my youngest son " died " for 9 minutes and they revived him with the trache and heart thing. After he came back he was smarter-he knew new words, etc etc. and was a gifted student where the other 3 kids had such heavy LD. Where did you learn that so I can find out more about it? S. Jonah >>Date: Fri, 16 Jul 1999 14:01:28 -0400 >> >> >> >>Hi , >> >>I am so happy to hear that Jonah is doing better and gaining weight. What >>kinds of changes have you made to his treatment that have had this >>wonderful change? By the way, how are you doing? You have had a rough go >>of >>it in the last few months with all of his setbacks. I hope things are >>getting easier for you as well. Take care and good to hear from you again. >> >> >> >> >>--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 1999 Report Share Posted August 4, 1999 , Your comments of brain assault causing new areas in the brain to open up hit me like a brick. I wonder if this is what happened when my youngest son " died " for 9 minutes and they revived him with the trache and heart thing. After he came back he was smarter-he knew new words, etc etc. and was a gifted student where the other 3 kids had such heavy LD. Where did you learn that so I can find out more about it? S. Jonah >>Date: Fri, 16 Jul 1999 14:01:28 -0400 >> >> >> >>Hi , >> >>I am so happy to hear that Jonah is doing better and gaining weight. What >>kinds of changes have you made to his treatment that have had this >>wonderful change? By the way, how are you doing? You have had a rough go >>of >>it in the last few months with all of his setbacks. I hope things are >>getting easier for you as well. Take care and good to hear from you again. >> >> >> >> >>--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 1999 Report Share Posted August 9, 1999 Jonah has complex one and a primary carnitine deficiency.He was diagnosed with two muscle biopsies and a skin biopsy.He responded to carnitine quite drastically, and continues to do so.The real miracle worker for him though has been this new formula he has been put on.It is incredible.It is called Vivonex Pediatric and is manufactured by Novartis Nutrition.It says on the package that it is an elemental(100% free amino acids)diet for children 1-9 yrs old ansd is an effective alternative to TPN.It is used for stressed, catabolic children with gastrointestinal impairment who need a feeding that permits maximum absorbtion with minimal digestion.My son is g-tube fed but there are flavour packets that can be mixed into it for an oral feeder.This is the only formula that has worked for him.He takes it in conjuction with carnitine at 2 mg, 6 times per day, iron,cisapride and beclafen(muscle relaxant).He is much more stable, has acquired some muscle mass and is finally, at two years getting teeth.The right nutrition is doing this for him.We still need to see a mito specialist and are trying to get into Dr.Shoffner's clinic in Atlanta.Where are you from and who sees your child?Talk to you soon, and I hope this info helps! > >Reply-To: Mitoonelist >To: " 'Mitoonelist' " <Mitoonelist> >Subject: RE: Jonah >Date: Tue, 3 Aug 1999 23:58:55 -0500 > > > > - > >Please share Jonah's diagnosis with me. We have been evaluating carnitine >carrying formula for our Complex-3 deficient child but haven't begun yet. >Any details on diagnosis and results of treatment you could share? > >Thx - Hairston > > > Jonah > > >Date: Fri, 16 Jul 1999 14:01:28 -0400 > > > > > > > > > > > >Hi , > > > > > >I am so happy to hear that Jonah is doing better and gaining weight. >What > > >kinds of changes have you made to his treatment that have had this > > >wonderful change? By the way, how are you doing? You have had a rough >go > > > > >of > > >it in the last few months with all of his setbacks. I hope things are > > >getting easier for you as well. Take care and good to hear from you > > again. > > > > > > > > > > > > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 1999 Report Share Posted August 17, 1999 - From what you wrote, it sounds like this would be a good formula for me to check into. I looked up Norvartis on the web and it looked interesting. How did you get the Vivonex? Is it through a prescription or can you just order it? My son has an undiagnosed presumed mito disorder and I wouldn't mind trying it. Can you give me any add'l info? Thanks - Gail .L. wrote: > > > > Jonah has complex one and a primary carnitine deficiency.He was diagnosed > with two muscle biopsies and a skin biopsy.He responded to carnitine quite > drastically, and continues to do so.The real miracle worker for him though > has been this new formula he has been put on.It is incredible.It is called > Vivonex Pediatric and is manufactured by Novartis Nutrition.It says on the > package that it is an elemental(100% free amino acids)diet for children 1-9 > yrs old ansd is an effective alternative to TPN.It is used for stressed, > catabolic children with gastrointestinal impairment who need a feeding that > permits maximum absorbtion with minimal digestion.My son is g-tube fed but > there are flavour packets that can be mixed into it for an oral feeder.This > is the only formula that has worked for him.He takes it in conjuction with > carnitine at 2 mg, 6 times per day, iron,cisapride and beclafen(muscle > relaxant).He is much more stable, has acquired some muscle mass and is > finally, at two years getting teeth.The right nutrition is doing this for > him.We still need to see a mito specialist and are trying to get into > Dr.Shoffner's clinic in Atlanta.Where are you from and who sees your > child?Talk to you soon, and I hope this info helps! > > > > >Reply-To: Mitoonelist > >To: " 'Mitoonelist' " <Mitoonelist> > >Subject: RE: Jonah > >Date: Tue, 3 Aug 1999 23:58:55 -0500 > > > > > > > > - > > > >Please share Jonah's diagnosis with me. We have been evaluating carnitine > >carrying formula for our Complex-3 deficient child but haven't begun yet. > >Any details on diagnosis and results of treatment you could share? > > > >Thx - Hairston > > > > > Jonah > > > >Date: Fri, 16 Jul 1999 14:01:28 -0400 > > > > > > > > > > > > > > > >Hi , > > > > > > > >I am so happy to hear that Jonah is doing better and gaining weight. > >What > > > >kinds of changes have you made to his treatment that have had this > > > >wonderful change? By the way, how are you doing? You have had a rough > >go > > > > > > >of > > > >it in the last few months with all of his setbacks. I hope things are > > > >getting easier for you as well. Take care and good to hear from you > > > again. > > > > > > > > > > > > > > > > > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 1999 Report Share Posted August 17, 1999 - From what you wrote, it sounds like this would be a good formula for me to check into. I looked up Norvartis on the web and it looked interesting. How did you get the Vivonex? Is it through a prescription or can you just order it? My son has an undiagnosed presumed mito disorder and I wouldn't mind trying it. Can you give me any add'l info? Thanks - Gail .L. wrote: > > > > Jonah has complex one and a primary carnitine deficiency.He was diagnosed > with two muscle biopsies and a skin biopsy.He responded to carnitine quite > drastically, and continues to do so.The real miracle worker for him though > has been this new formula he has been put on.It is incredible.It is called > Vivonex Pediatric and is manufactured by Novartis Nutrition.It says on the > package that it is an elemental(100% free amino acids)diet for children 1-9 > yrs old ansd is an effective alternative to TPN.It is used for stressed, > catabolic children with gastrointestinal impairment who need a feeding that > permits maximum absorbtion with minimal digestion.My son is g-tube fed but > there are flavour packets that can be mixed into it for an oral feeder.This > is the only formula that has worked for him.He takes it in conjuction with > carnitine at 2 mg, 6 times per day, iron,cisapride and beclafen(muscle > relaxant).He is much more stable, has acquired some muscle mass and is > finally, at two years getting teeth.The right nutrition is doing this for > him.We still need to see a mito specialist and are trying to get into > Dr.Shoffner's clinic in Atlanta.Where are you from and who sees your > child?Talk to you soon, and I hope this info helps! > > > > >Reply-To: Mitoonelist > >To: " 'Mitoonelist' " <Mitoonelist> > >Subject: RE: Jonah > >Date: Tue, 3 Aug 1999 23:58:55 -0500 > > > > > > > > - > > > >Please share Jonah's diagnosis with me. We have been evaluating carnitine > >carrying formula for our Complex-3 deficient child but haven't begun yet. > >Any details on diagnosis and results of treatment you could share? > > > >Thx - Hairston > > > > > Jonah > > > >Date: Fri, 16 Jul 1999 14:01:28 -0400 > > > > > > > > > > > > > > > >Hi , > > > > > > > >I am so happy to hear that Jonah is doing better and gaining weight. > >What > > > >kinds of changes have you made to his treatment that have had this > > > >wonderful change? By the way, how are you doing? You have had a rough > >go > > > > > > >of > > > >it in the last few months with all of his setbacks. I hope things are > > > >getting easier for you as well. Take care and good to hear from you > > > again. > > > > > > > > > > > > > > > > > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 1999 Report Share Posted August 17, 1999 - From what you wrote, it sounds like this would be a good formula for me to check into. I looked up Norvartis on the web and it looked interesting. How did you get the Vivonex? Is it through a prescription or can you just order it? My son has an undiagnosed presumed mito disorder and I wouldn't mind trying it. Can you give me any add'l info? Thanks - Gail .L. wrote: > > > > Jonah has complex one and a primary carnitine deficiency.He was diagnosed > with two muscle biopsies and a skin biopsy.He responded to carnitine quite > drastically, and continues to do so.The real miracle worker for him though > has been this new formula he has been put on.It is incredible.It is called > Vivonex Pediatric and is manufactured by Novartis Nutrition.It says on the > package that it is an elemental(100% free amino acids)diet for children 1-9 > yrs old ansd is an effective alternative to TPN.It is used for stressed, > catabolic children with gastrointestinal impairment who need a feeding that > permits maximum absorbtion with minimal digestion.My son is g-tube fed but > there are flavour packets that can be mixed into it for an oral feeder.This > is the only formula that has worked for him.He takes it in conjuction with > carnitine at 2 mg, 6 times per day, iron,cisapride and beclafen(muscle > relaxant).He is much more stable, has acquired some muscle mass and is > finally, at two years getting teeth.The right nutrition is doing this for > him.We still need to see a mito specialist and are trying to get into > Dr.Shoffner's clinic in Atlanta.Where are you from and who sees your > child?Talk to you soon, and I hope this info helps! > > > > >Reply-To: Mitoonelist > >To: " 'Mitoonelist' " <Mitoonelist> > >Subject: RE: Jonah > >Date: Tue, 3 Aug 1999 23:58:55 -0500 > > > > > > > > - > > > >Please share Jonah's diagnosis with me. We have been evaluating carnitine > >carrying formula for our Complex-3 deficient child but haven't begun yet. > >Any details on diagnosis and results of treatment you could share? > > > >Thx - Hairston > > > > > Jonah > > > >Date: Fri, 16 Jul 1999 14:01:28 -0400 > > > > > > > > > > > > > > > >Hi , > > > > > > > >I am so happy to hear that Jonah is doing better and gaining weight. > >What > > > >kinds of changes have you made to his treatment that have had this > > > >wonderful change? By the way, how are you doing? You have had a rough > >go > > > > > > >of > > > >it in the last few months with all of his setbacks. I hope things are > > > >getting easier for you as well. Take care and good to hear from you > > > again. > > > > > > > > > > > > > > > > > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 1999 Report Share Posted August 17, 1999 In a message dated 8/17/99 11:23:20 AM Eastern Daylight Time, houllion@... writes: << From what you wrote, it sounds like this would be a good formula for me to check into. I looked up Norvartis on the web and it looked interesting. How did you get the Vivonex? Is it through a prescription or can you just order it? My son has an undiagnosed presumed mito disorder and I wouldn't mind trying it. Can you give me any add'l info? Thanks - Gail >> Gail: Clayton used to be on Vivonex Pediatric. I have several boxes left of that and Neocate 1+ and I will gladly send you some samples for free (or anyone else). Clayton is now on Elecare (same as Neocate and Vivonex - amino acid formula made by Ross). Love, Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 1999 Report Share Posted August 17, 1999 In a message dated 8/17/99 11:23:20 AM Eastern Daylight Time, houllion@... writes: << From what you wrote, it sounds like this would be a good formula for me to check into. I looked up Norvartis on the web and it looked interesting. How did you get the Vivonex? Is it through a prescription or can you just order it? My son has an undiagnosed presumed mito disorder and I wouldn't mind trying it. Can you give me any add'l info? Thanks - Gail >> Gail: Clayton used to be on Vivonex Pediatric. I have several boxes left of that and Neocate 1+ and I will gladly send you some samples for free (or anyone else). Clayton is now on Elecare (same as Neocate and Vivonex - amino acid formula made by Ross). Love, Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 1999 Report Share Posted August 20, 1999 hi, well I live in Canada,so things may be different, but I do believe it is a formula you need a prescription for, unless you have a children's hospital nearby that has a specialized shop for nutritional needs for kids.We do here in Toronto.If you child is not on a gtube than make sure to get the flavour packets.Go to your usual pharmacy and tell them about the formula so they can order it in for you and then as k your doc for a 1 month trial Rx.It truly is a miracle formula.It has totally transformed Jonah.I wonder if all the parents with mito kids on TPN know about this because a gtube or oral feeds are obviously much safer than tpn and they can be fed at home! > >Reply-To: Mitoonelist >To: Mitoonelist >Subject: Re: Jonah >Date: Tue, 17 Aug 1999 07:32:15 -0400 > > > > - > >From what you wrote, it sounds like this would be a good formula for me >to check into. I looked up Norvartis on the web and it looked >interesting. How did you get the Vivonex? Is it through a prescription >or can you just order it? My son has an undiagnosed presumed mito >disorder and I wouldn't mind trying it. Can you give me any add'l info? >Thanks - Gail > > .L. wrote: > > > > > > > > Jonah has complex one and a primary carnitine deficiency.He was >diagnosed > > with two muscle biopsies and a skin biopsy.He responded to carnitine >quite > > drastically, and continues to do so.The real miracle worker for him >though > > has been this new formula he has been put on.It is incredible.It is >called > > Vivonex Pediatric and is manufactured by Novartis Nutrition.It says on >the > > package that it is an elemental(100% free amino acids)diet for children >1-9 > > yrs old ansd is an effective alternative to TPN.It is used for stressed, > > catabolic children with gastrointestinal impairment who need a feeding >that > > permits maximum absorbtion with minimal digestion.My son is g-tube fed >but > > there are flavour packets that can be mixed into it for an oral >feeder.This > > is the only formula that has worked for him.He takes it in conjuction >with > > carnitine at 2 mg, 6 times per day, iron,cisapride and beclafen(muscle > > relaxant).He is much more stable, has acquired some muscle mass and is > > finally, at two years getting teeth.The right nutrition is doing this >for > > him.We still need to see a mito specialist and are trying to get into > > Dr.Shoffner's clinic in Atlanta.Where are you from and who sees your > > child?Talk to you soon, and I hope this info helps! > > > > > > > >Reply-To: Mitoonelist > > >To: " 'Mitoonelist' " <Mitoonelist> > > >Subject: RE: Jonah > > >Date: Tue, 3 Aug 1999 23:58:55 -0500 > > > > > > > > > > > > - > > > > > >Please share Jonah's diagnosis with me. We have been evaluating >carnitine > > >carrying formula for our Complex-3 deficient child but haven't begun >yet. > > >Any details on diagnosis and results of treatment you could share? > > > > > >Thx - Hairston > > > > > > > Jonah > > > > >Date: Fri, 16 Jul 1999 14:01:28 -0400 > > > > > > > > > > > > > > > > > > > >Hi , > > > > > > > > > >I am so happy to hear that Jonah is doing better and gaining >weight. > > >What > > > > >kinds of changes have you made to his treatment that have had this > > > > >wonderful change? By the way, how are you doing? You have had a >rough > > >go > > > > > > > > >of > > > > >it in the last few months with all of his setbacks. I hope things >are > > > > >getting easier for you as well. Take care and good to hear from you > > > > again. > > > > > > > > > > > > > > > > > > > > > > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 1999 Report Share Posted August 20, 1999 Thanks - I'll ask Dr. Cohen when we see him in Oct. Gail .L. wrote: > > > > hi, well I live in Canada,so things may be different, but I do believe it is > a formula you need a prescription for, unless you have a children's hospital > nearby that has a specialized shop for nutritional needs for kids.We do here > in Toronto.If you child is not on a gtube than make sure to get the flavour > packets.Go to your usual pharmacy and tell them about the formula so they > can order it in for you and then as k your doc for a 1 month trial Rx.It > truly is a miracle formula.It has totally transformed Jonah.I wonder if all > the parents with mito kids on TPN know about this because a gtube or oral > feeds are obviously much safer than tpn and they can be fed at home! > > > > >Reply-To: Mitoonelist > >To: Mitoonelist > >Subject: Re: Jonah > >Date: Tue, 17 Aug 1999 07:32:15 -0400 > > > > > > > > - > > > >From what you wrote, it sounds like this would be a good formula for me > >to check into. I looked up Norvartis on the web and it looked > >interesting. How did you get the Vivonex? Is it through a prescription > >or can you just order it? My son has an undiagnosed presumed mito > >disorder and I wouldn't mind trying it. Can you give me any add'l info? > >Thanks - Gail > > > > .L. wrote: > > > > > > > > > > > > Jonah has complex one and a primary carnitine deficiency.He was > >diagnosed > > > with two muscle biopsies and a skin biopsy.He responded to carnitine > >quite > > > drastically, and continues to do so.The real miracle worker for him > >though > > > has been this new formula he has been put on.It is incredible.It is > >called > > > Vivonex Pediatric and is manufactured by Novartis Nutrition.It says on > >the > > > package that it is an elemental(100% free amino acids)diet for children > >1-9 > > > yrs old ansd is an effective alternative to TPN.It is used for stressed, > > > catabolic children with gastrointestinal impairment who need a feeding > >that > > > permits maximum absorbtion with minimal digestion.My son is g-tube fed > >but > > > there are flavour packets that can be mixed into it for an oral > >feeder.This > > > is the only formula that has worked for him.He takes it in conjuction > >with > > > carnitine at 2 mg, 6 times per day, iron,cisapride and beclafen(muscle > > > relaxant).He is much more stable, has acquired some muscle mass and is > > > finally, at two years getting teeth.The right nutrition is doing this > >for > > > him.We still need to see a mito specialist and are trying to get into > > > Dr.Shoffner's clinic in Atlanta.Where are you from and who sees your > > > child?Talk to you soon, and I hope this info helps! > > > > > > > > > > >Reply-To: Mitoonelist > > > >To: " 'Mitoonelist' " <Mitoonelist> > > > >Subject: RE: Jonah > > > >Date: Tue, 3 Aug 1999 23:58:55 -0500 > > > > > > > > > > > > > > > > - > > > > > > > >Please share Jonah's diagnosis with me. We have been evaluating > >carnitine > > > >carrying formula for our Complex-3 deficient child but haven't begun > >yet. > > > >Any details on diagnosis and results of treatment you could share? > > > > > > > >Thx - Hairston > > > > > > > > > Jonah > > > > > >Date: Fri, 16 Jul 1999 14:01:28 -0400 > > > > > > > > > > > > > > > > > > > > > > > >Hi , > > > > > > > > > > > >I am so happy to hear that Jonah is doing better and gaining > >weight. > > > >What > > > > > >kinds of changes have you made to his treatment that have had this > > > > > >wonderful change? By the way, how are you doing? You have had a > >rough > > > >go > > > > > > > > > > >of > > > > > >it in the last few months with all of his setbacks. I hope things > >are > > > > > >getting easier for you as well. Take care and good to hear from you > > > > > again. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 1999 Report Share Posted August 20, 1999 Thanks - I'll ask Dr. Cohen when we see him in Oct. Gail .L. wrote: > > > > hi, well I live in Canada,so things may be different, but I do believe it is > a formula you need a prescription for, unless you have a children's hospital > nearby that has a specialized shop for nutritional needs for kids.We do here > in Toronto.If you child is not on a gtube than make sure to get the flavour > packets.Go to your usual pharmacy and tell them about the formula so they > can order it in for you and then as k your doc for a 1 month trial Rx.It > truly is a miracle formula.It has totally transformed Jonah.I wonder if all > the parents with mito kids on TPN know about this because a gtube or oral > feeds are obviously much safer than tpn and they can be fed at home! > > > > >Reply-To: Mitoonelist > >To: Mitoonelist > >Subject: Re: Jonah > >Date: Tue, 17 Aug 1999 07:32:15 -0400 > > > > > > > > - > > > >From what you wrote, it sounds like this would be a good formula for me > >to check into. I looked up Norvartis on the web and it looked > >interesting. How did you get the Vivonex? Is it through a prescription > >or can you just order it? My son has an undiagnosed presumed mito > >disorder and I wouldn't mind trying it. Can you give me any add'l info? > >Thanks - Gail > > > > .L. wrote: > > > > > > > > > > > > Jonah has complex one and a primary carnitine deficiency.He was > >diagnosed > > > with two muscle biopsies and a skin biopsy.He responded to carnitine > >quite > > > drastically, and continues to do so.The real miracle worker for him > >though > > > has been this new formula he has been put on.It is incredible.It is > >called > > > Vivonex Pediatric and is manufactured by Novartis Nutrition.It says on > >the > > > package that it is an elemental(100% free amino acids)diet for children > >1-9 > > > yrs old ansd is an effective alternative to TPN.It is used for stressed, > > > catabolic children with gastrointestinal impairment who need a feeding > >that > > > permits maximum absorbtion with minimal digestion.My son is g-tube fed > >but > > > there are flavour packets that can be mixed into it for an oral > >feeder.This > > > is the only formula that has worked for him.He takes it in conjuction > >with > > > carnitine at 2 mg, 6 times per day, iron,cisapride and beclafen(muscle > > > relaxant).He is much more stable, has acquired some muscle mass and is > > > finally, at two years getting teeth.The right nutrition is doing this > >for > > > him.We still need to see a mito specialist and are trying to get into > > > Dr.Shoffner's clinic in Atlanta.Where are you from and who sees your > > > child?Talk to you soon, and I hope this info helps! > > > > > > > > > > >Reply-To: Mitoonelist > > > >To: " 'Mitoonelist' " <Mitoonelist> > > > >Subject: RE: Jonah > > > >Date: Tue, 3 Aug 1999 23:58:55 -0500 > > > > > > > > > > > > > > > > - > > > > > > > >Please share Jonah's diagnosis with me. We have been evaluating > >carnitine > > > >carrying formula for our Complex-3 deficient child but haven't begun > >yet. > > > >Any details on diagnosis and results of treatment you could share? > > > > > > > >Thx - Hairston > > > > > > > > > Jonah > > > > > >Date: Fri, 16 Jul 1999 14:01:28 -0400 > > > > > > > > > > > > > > > > > > > > > > > >Hi , > > > > > > > > > > > >I am so happy to hear that Jonah is doing better and gaining > >weight. > > > >What > > > > > >kinds of changes have you made to his treatment that have had this > > > > > >wonderful change? By the way, how are you doing? You have had a > >rough > > > >go > > > > > > > > > > >of > > > > > >it in the last few months with all of his setbacks. I hope things > >are > > > > > >getting easier for you as well. Take care and good to hear from you > > > > > again. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 1999 Report Share Posted August 23, 1999 what do you mean!!!Y ou'll have to clarify for me!Thanks > >Reply-To: Mitoonelist >To: <Mitoonelist> >Subject: Re: Jonah >Date: Mon, 21 Jun 1999 02:24:37 -0700 > > > >try? > > Jonah > >> > > > > >Date: Fri, 16 Jul 1999 14:01:28 -0400 > >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > >Hi , > >> > > > > > > >> > > > > >I am so happy to hear that Jonah is doing better and gaining > >> >weight. > >> > > >What > >> > > > > >kinds of changes have you made to his treatment that have had >this > >> > > > > >wonderful change? By the way, how are you doing? You have had >a > >> >rough > >> > > >go > >> > > > > > >> > > > > >of > >> > > > > >it in the last few months with all of his setbacks. I hope >things > >> >are > >> > > > > >getting easier for you as well. Take care and good to hear >from >you > >> > > > > again. > >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 1999 Report Share Posted August 23, 1999 what do you mean!!!Y ou'll have to clarify for me!Thanks > >Reply-To: Mitoonelist >To: <Mitoonelist> >Subject: Re: Jonah >Date: Mon, 21 Jun 1999 02:24:37 -0700 > > > >try? > > Jonah > >> > > > > >Date: Fri, 16 Jul 1999 14:01:28 -0400 > >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > >Hi , > >> > > > > > > >> > > > > >I am so happy to hear that Jonah is doing better and gaining > >> >weight. > >> > > >What > >> > > > > >kinds of changes have you made to his treatment that have had >this > >> > > > > >wonderful change? By the way, how are you doing? You have had >a > >> >rough > >> > > >go > >> > > > > > >> > > > > >of > >> > > > > >it in the last few months with all of his setbacks. I hope >things > >> >are > >> > > > > >getting easier for you as well. Take care and good to hear >from >you > >> > > > > again. > >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 1999 Report Share Posted August 24, 1999 - I asked Dr. Cohen about the Vivonex and he said that he had never heard of it, but that perhaps your son was on it due to liver problems.. Is that the case? Would you mind letting me know what is in it? Thanks - Gail wrote: > > > > I'm sorry , I made a note to myself and meant to put it in my draft > folder so I wouldn't forget to reread all of this stuff about this formula > and think if we should try it. Then I accidently hit the send button > instead. > Sorry. > > Re: Jonah > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 1999 Report Share Posted August 24, 1999 - I asked Dr. Cohen about the Vivonex and he said that he had never heard of it, but that perhaps your son was on it due to liver problems.. Is that the case? Would you mind letting me know what is in it? Thanks - Gail wrote: > > > > I'm sorry , I made a note to myself and meant to put it in my draft > folder so I wouldn't forget to reread all of this stuff about this formula > and think if we should try it. Then I accidently hit the send button > instead. > Sorry. > > Re: Jonah > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 1999 Report Share Posted August 24, 1999 - I asked Dr. Cohen about the Vivonex and he said that he had never heard of it, but that perhaps your son was on it due to liver problems.. Is that the case? Would you mind letting me know what is in it? Thanks - Gail wrote: > > > > I'm sorry , I made a note to myself and meant to put it in my draft > folder so I wouldn't forget to reread all of this stuff about this formula > and think if we should try it. Then I accidently hit the send button > instead. > Sorry. > > Re: Jonah > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 1999 Report Share Posted August 26, 1999 Hi Gail,no Jonah does not have liver problems,in fact the idea is to use yhis formula as a replacement for Total Parenteral Feedings,so that children that are nutritionally compromised and have trouble thriving on standard pre-digested formulas can try this instead.I will give you a rundown on it....an elemental 100 % free amino acid diet for children ages 1-9.It's a high-essential to non-essential amino acid ratio with enhanced glutamine content and optimal quality of protien sparing carbohydrate make it especially useful in stressed, catabolic children,which is true for a lot of mito kids.This diet will further benefit those with gastrointestinal impairment for a feeding that permits maximal absorbtion with minimal digestion.(all this is off the box).It provides 0.8 cal per ml or 200 cal per packet.Also 12% protein.63% carbo, and 25 % fat.Have you tried contacting novartis?If you email me your info, (address and what not) I will call them for you, as they are based in the same Canadian province that I live in and I can get some printed info for you and mail it off.Just let me know!!!!Hope this helps! > >Reply-To: Mitoonelist >To: Mitoonelist >Subject: Re: Jonah >Date: Tue, 24 Aug 1999 11:40:11 -0400 > > > > - > >I asked Dr. Cohen about the Vivonex and he said that he had never heard >of it, but that perhaps your son was on it due to liver problems.. Is >that the case? Would you mind letting me know what is in it? Thanks - >Gail > > wrote: > > > > > > > > I'm sorry , I made a note to myself and meant to put it in my >draft > > folder so I wouldn't forget to reread all of this stuff about this >formula > > and think if we should try it. Then I accidently hit the send button > > instead. > > Sorry. > > > > Re: Jonah > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
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