Guest guest Posted November 7, 2006 Report Share Posted November 7, 2006 Hi Everyone- I'm new to the listserv. My name is Beth and I have an awesome 12 month old boy, Aiden, with CHARGE. Aiden has made tremendous leaps and bounds in the past year. However, one of the huge issues we are still working on is his swallow function. Aiden is exclusively J-tube fed and while his swallow function has most definitely improved as he has gotten bigger and stronger, it is not to the point where he is ready to eat by mouth. His Speech pathologist mentioned looking into vitalstim which is electical stimuation of the swallowing muscles to help improve their strength. I was wondering if any of you have heard of it or had any success with it. Also, are there any CHARGERs out there who have gone from being exclusively tube fed to being able to eat exclusively by mouth??? Thanks- Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2006 Report Share Posted November 7, 2006 Beth: had a nissen and g-tube at 5 days old, due to having no suck/swallow instinct and also having reflux. was tube fed (g-, not j-tube) until she was 9 years old. (I know: That seems like an awful long time yet to you.) We just let her go at her own pace in developing the oral feeding. If we or the therapist pushed, it just didn't progress at all. She now eats most things. The one problem we still encounter is with meats: She does not chew well so doesn't like to eat hard meats. She doesn't seem able to move food very well to her molars for grinding; it all stays to the front teeth, which makes it hard for her to chew things up appropriately. I think it is a " tongue thing " related to strength. She can move her tongue whichever way you ask, but she can't move food with it. But she loves to eat now! Her favorite foods are still mashed potatoes and chocolate pudding. (Not together - HA!) Friends in CHARGE, Marilyn Ogan Mom of (14 yrs, CHARGE+ JRA) Mom of Ken (17 yrs, Asperger's) Wife of Rick oganm@... vitalstim? Hi Everyone- I'm new to the listserv. My name is Beth and I have an awesome 12 month old boy, Aiden, with CHARGE. Aiden has made tremendous leaps and bounds in the past year. However, one of the huge issues we are still working on is his swallow function. Aiden is exclusively J-tube fed and while his swallow function has most definitely improved as he has gotten bigger and stronger, it is not to the point where he is ready to eat by mouth. His Speech pathologist mentioned looking into vitalstim which is electical stimuation of the swallowing muscles to help improve their strength. I was wondering if any of you have heard of it or had any success with it. Also, are there any CHARGERs out there who have gone from being exclusively tube fed to being able to eat exclusively by mouth??? Thanks- Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2006 Report Share Posted November 8, 2006 Marilyn- thanks for the info! It's encouraging to hear that. I guess it doesn't matter how long it takes, as long as that is the ultimate goal! Beth > > Beth: > had a nissen and g-tube at 5 days old, due to having no suck/swallow > instinct and also having reflux. was tube fed (g-, not j-tube) > until she was 9 years old. (I know: That seems like an awful long time yet > to you.) We just let her go at her own pace in developing the oral feeding. > If we or the therapist pushed, it just didn't progress at all. She now eats > most things. The one problem we still encounter is with meats: She does > not chew well so doesn't like to eat hard meats. She doesn't seem able to > move food very well to her molars for grinding; it all stays to the front > teeth, which makes it hard for her to chew things up appropriately. I think > it is a " tongue thing " related to strength. She can move her tongue > whichever way you ask, but she can't move food with it. But she loves to eat > now! Her favorite foods are still mashed potatoes and chocolate pudding. > (Not together - HA!) > > Friends in CHARGE, > Marilyn Ogan > Mom of (14 yrs, CHARGE+ JRA) > Mom of Ken (17 yrs, Asperger's) > Wife of Rick > oganm@... > > vitalstim? > > Hi Everyone- I'm new to the listserv. My name is Beth and I have an > awesome 12 month old boy, Aiden, with CHARGE. Aiden has made > tremendous leaps and bounds in the past year. However, one of the > huge issues we are still working on is his swallow function. Aiden is > exclusively J-tube fed and while his swallow function has most > definitely improved as he has gotten bigger and stronger, it is not to > the point where he is ready to eat by mouth. His Speech pathologist > mentioned looking into vitalstim which is electical stimuation of the > swallowing muscles to help improve their strength. I was wondering if > any of you have heard of it or had any success with it. Also, are > there any CHARGERs out there who have gone from being exclusively tube > fed to being able to eat exclusively by mouth??? Thanks- Beth > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2006 Report Share Posted November 8, 2006 Hi, wow! I've never heart of this type of theropy but it sounds awesome!! I wish someone would have mentioned if for my daughter. After reading your post I left a message with my speech pathologist to see if she's ever heard of it. If it is in fact a very effective theropy I'm gonna lose it on some of the specialists envolved with Alissa. Is shouldn't have had to heard about this on my own yet once again I don't know why I'm soo surprised. Let me know anything else you find out about it. Thanks > > Hi Everyone- I'm new to the listserv. My name is Beth and I have an > awesome 12 month old boy, Aiden, with CHARGE. Aiden has made > tremendous leaps and bounds in the past year. However, one of the > huge issues we are still working on is his swallow function. Aiden is > exclusively J-tube fed and while his swallow function has most > definitely improved as he has gotten bigger and stronger, it is not to > the point where he is ready to eat by mouth. His Speech pathologist > mentioned looking into vitalstim which is electical stimuation of the > swallowing muscles to help improve their strength. I was wondering if > any of you have heard of it or had any success with it. Also, are > there any CHARGERs out there who have gone from being exclusively tube > fed to being able to eat exclusively by mouth??? Thanks- Beth > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2006 Report Share Posted November 8, 2006 im a 21 year old charger ive been on jfeeds for 21 years and no bac on the gtube in the past few years ive started eating orally so it can take years or days LOL > > Hi, wow! I've never heart of this type of theropy but it sounds > awesome!! I wish someone would have mentioned if for my daughter. > After reading your post I left a message with my speech pathologist to > see if she's ever heard of it. If it is in fact a very effective > theropy I'm gonna lose it on some of the specialists envolved with > Alissa. Is shouldn't have had to heard about this on my own yet once > again I don't know why I'm soo surprised. Let me know anything else > you find out about it. Thanks > > > > > Hi Everyone- I'm new to the listserv. My name is Beth and I have an > > awesome 12 month old boy, Aiden, with CHARGE. Aiden has made > > tremendous leaps and bounds in the past year. However, one of the > > huge issues we are still working on is his swallow function. Aiden is > > exclusively J-tube fed and while his swallow function has most > > definitely improved as he has gotten bigger and stronger, it is not to > > the point where he is ready to eat by mouth. His Speech pathologist > > mentioned looking into vitalstim which is electical stimuation of the > > swallowing muscles to help improve their strength. I was wondering if > > any of you have heard of it or had any success with it. Also, are > > there any CHARGERs out there who have gone from being exclusively tube > > fed to being able to eat exclusively by mouth??? Thanks- Beth > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2006 Report Share Posted November 8, 2006 Not together, eh? Phooie. I thought we had some new competition/entries as follow-up to our tasty discussions of last summer that originated with natto and peanut butter and potato chip sandwiches. RE: vitalstim? But she loves to eat now! Her favorite foods are still mashed potatoes and chocolate pudding. (Not together - HA!) Friends in CHARGE, Marilyn Ogan Mom of (14 yrs, CHARGE+ JRA) Mom of Ken (17 yrs, Asperger's) Wife of Rick oganm@... Recent Activity a.. 3New Members Visit Your Group Yahoo! TV Staying in tonight? Check listings to see what is on. Biz Resources Y! Small Business Articles, tools, forms, and more. Your Story Opened in the 2020 The Yahoo! Time Capsule Project . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2006 Report Share Posted November 8, 2006 hey mashed taters w/ chocolate pudding sounds great to me :-) Cole > > Not together, eh? Phooie. I thought we had some new competition/entries > as follow-up to our tasty discussions of last summer that originated with > natto and peanut butter and potato chip sandwiches. > > > RE: vitalstim? > > But she loves to eat > now! Her favorite foods are still mashed potatoes and chocolate pudding. > (Not together - HA!) > > Friends in CHARGE, > Marilyn Ogan > Mom of (14 yrs, CHARGE+ JRA) > Mom of Ken (17 yrs, Asperger's) > Wife of Rick > oganm@... <oganm%40insightbb.com> > > Recent Activity > a.. 3New Members > Visit Your Group > Yahoo! TV > Staying in tonight? > > Check listings to > > see what is on. > > Biz Resources > Y! Small Business > > Articles, tools, > > forms, and more. > > Your Story > Opened in the 2020 > > The Yahoo! Time > > Capsule Project > . > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2006 Report Share Posted November 8, 2006 You are too funny Cole! munching on potato chips after having just returned from a lecture given by Al Gore. RE: vitalstim? > > But she loves to eat > now! Her favorite foods are still mashed potatoes and chocolate pudding. > (Not together - HA!) > > Friends in CHARGE, > Marilyn Ogan > Mom of (14 yrs, CHARGE+ JRA) > Mom of Ken (17 yrs, Asperger's) > Wife of Rick > oganm@... <oganm%40insightbb.com> > > Recent Activity > a.. 3New Members > Visit Your Group > Yahoo! TV > Staying in tonight? > > Check listings to > > see what is on. > > Biz Resources > Y! Small Business > > Articles, tools, > > forms, and more. > > Your Story > Opened in the 2020 > > The Yahoo! Time > > Capsule Project > . > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2006 Report Share Posted November 8, 2006 mmmmmmm well wat bout cheese and vegimite together nothing else thats me > > You are too funny Cole! > > > munching on potato chips after having just returned from a lecture given > by Al Gore. > RE: vitalstim? > > > > But she loves to eat > > now! Her favorite foods are still mashed potatoes and chocolate pudding. > > (Not together - HA!) > > > > Friends in CHARGE, > > Marilyn Ogan > > Mom of (14 yrs, CHARGE+ JRA) > > Mom of Ken (17 yrs, Asperger's) > > Wife of Rick > > oganm@... <oganm%40insightbb.com> <oganm%40insightbb.com> > > > > Recent Activity > > a.. 3New Members > > Visit Your Group > > Yahoo! TV > > Staying in tonight? > > > > Check listings to > > > > see what is on. > > > > Biz Resources > > Y! Small Business > > > > Articles, tools, > > > > forms, and more. > > > > Your Story > > Opened in the 2020 > > > > The Yahoo! Time > > > > Capsule Project > > . > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2006 Report Share Posted November 8, 2006 Eddie's private SLP and the SLP supervisor at school don't think much of it, but I'm going to explore it for my son. Eddie has always been an oral eater (never age appropriate, he never really chews anything) but he seems to have regressed and now cannot tolerate any chunky pieces without bringing it up. He's 7. I'll find out next week if he's a candidate for vital stim. From what I understand, some CHARGErs have had success with it, some not. Check the yahoogroups archives for this topic. > I left a message with my speech pathologist to see if she's ever heard > of it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2006 Report Share Posted November 8, 2006 Haha, , I thought the same thing and your lovely face popped right into my head when I was reading! pam > Not together, eh? Phooie. I thought we had some new competition/entries as > follow-up to our tasty discussions of last summer that originated with natto > and peanut butter and potato chip sandwiches. > > > RE: vitalstim? > > > But she loves to eat > now! Her favorite foods are still mashed potatoes and chocolate pudding. > (Not together - HA!) > > Friends in CHARGE, > Marilyn Ogan > Mom of (14 yrs, CHARGE+ JRA) > Mom of Ken (17 yrs, Asperger's) > Wife of Rick > oganm@... > > > Recent Activity > a.. 3New Members > Visit Your Group > Yahoo! TV > Staying in tonight? > > Check listings to > > see what is on. > > Biz Resources > Y! Small Business > > Articles, tools, > > forms, and more. > > Your Story > Opened in the 2020 > > The Yahoo! Time > > Capsule Project > . > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2006 Report Share Posted November 8, 2006 Cole, You are from Texas, what do you know about food, haha. Xo pam > hey mashed taters w/ chocolate pudding sounds great to me :-) > Cole > > > >> >> Not together, eh? Phooie. I thought we had some new competition/entries >> as follow-up to our tasty discussions of last summer that originated with >> natto and peanut butter and potato chip sandwiches. >> >> >> RE: vitalstim? >> >> But she loves to eat >> now! Her favorite foods are still mashed potatoes and chocolate pudding. >> (Not together - HA!) >> >> Friends in CHARGE, >> Marilyn Ogan >> Mom of (14 yrs, CHARGE+ JRA) >> Mom of Ken (17 yrs, Asperger's) >> Wife of Rick >> oganm@... <oganm%40insightbb.com> >> >> Recent Activity >> a.. 3New Members >> Visit Your Group >> Yahoo! TV >> Staying in tonight? >> >> Check listings to >> >> see what is on. >> >> Biz Resources >> Y! Small Business >> >> Articles, tools, >> >> forms, and more. >> >> Your Story >> Opened in the 2020 >> >> The Yahoo! Time >> >> Capsule Project >> . >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2006 Report Share Posted November 8, 2006 Eewwwww! It sounds awful!!!!! Ellen, you are funny!!! pam > mmmmmmm well wat bout cheese and vegimite together nothing else thats me > > >> >> You are too funny Cole! >> >> >> munching on potato chips after having just returned from a lecture given >> by Al Gore. >> RE: vitalstim? >>> >>> But she loves to eat >>> now! Her favorite foods are still mashed potatoes and chocolate pudding. >>> (Not together - HA!) >>> >>> Friends in CHARGE, >>> Marilyn Ogan >>> Mom of (14 yrs, CHARGE+ JRA) >>> Mom of Ken (17 yrs, Asperger's) >>> Wife of Rick >>> oganm@... <oganm%40insightbb.com> <oganm%40insightbb.com> >>> >>> Recent Activity >>> a.. 3New Members >>> Visit Your Group >>> Yahoo! TV >>> Staying in tonight? >>> >>> Check listings to >>> >>> see what is on. >>> >>> Biz Resources >>> Y! Small Business >>> >>> Articles, tools, >>> >>> forms, and more. >>> >>> Your Story >>> Opened in the 2020 >>> >>> The Yahoo! Time >>> >>> Capsule Project >>> . >>> >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2006 Report Share Posted November 8, 2006 does, however, put ketchup on the mashed potatoes! Friends in CHARGE, Marilyn Ogan Mom of (14 yrs, CHARGE+ JRA) Mom of Ken (17 yrs, Asperger's) Wife of Rick oganm@... Re: vitalstim? Not together, eh? Phooie. I thought we had some new competition/entries as follow-up to our tasty discussions of last summer that originated with natto and peanut butter and potato chip sandwiches. RE: vitalstim? But she loves to eat now! Her favorite foods are still mashed potatoes and chocolate pudding. (Not together - HA!) Friends in CHARGE, Marilyn Ogan Mom of (14 yrs, CHARGE+ JRA) Mom of Ken (17 yrs, Asperger's) Wife of Rick oganm@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2006 Report Share Posted November 8, 2006 Way to ruin mashed potatoes, !!! pam > does, however, put ketchup on the mashed potatoes! > > Friends in CHARGE, > Marilyn Ogan > Mom of (14 yrs, CHARGE+ JRA) > Mom of Ken (17 yrs, Asperger's) > Wife of Rick > oganm@... > > Re: vitalstim? > > Not together, eh? Phooie. I thought we had some new competition/entries as > follow-up to our tasty discussions of last summer that originated with natto > and peanut butter and potato chip sandwiches. > > > RE: vitalstim? > > > But she loves to eat > now! Her favorite foods are still mashed potatoes and chocolate pudding. > (Not together - HA!) > > Friends in CHARGE, > Marilyn Ogan > Mom of (14 yrs, CHARGE+ JRA) > Mom of Ken (17 yrs, Asperger's) > Wife of Rick > oganm@... > > > CHARGE SYNDROME LISTSERV PHOTO PAGE: > http://www.imagestation.com/album/?id=2117043995 > > Membership of this email support group does not constitute membership in the > CHARGE Syndrome Foundation; for information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org > > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2006 Report Share Posted November 8, 2006 Hello, My son receives vital stim everyday for 1 hour! Our experience has been great. He now takes a pacifer, will take bites of food and is now trying to drink from a cup. Its helping him to swallow. He still has a long ways to go, but he's came a long way! Jonas has had his cochlear implant for 1 1/2 months and is hearing everthing. Nothing developed in his right ear, and he has Mondini Deformity in his left, the one they implanted. The doctors didn't know how much hearing he would get from the implant! he has surprised everyone. He's already trying to say words, he's mouth just moves, but no voice is coming out yet! He has a trach, and we are working on the passy muir, he fights us when we put it on. Take care of 1 problem at a time! :-) Mother to Jonas 2 years old Charge Syndrome --------------------------------- Everyone is raving about the all-new Yahoo! Mail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2006 Report Share Posted November 9, 2006 i am SO not from texas - i live here i'm not FROM here. if you must know i'm FROM the united states of america tyvm. pfft Cole :-) > > Cole, > You are from Texas, what do you know about food, haha. > Xo > pam > > On 11/8/06 1:51 AM, " Angelcole " <Angelcole@...<Angelcole%40gmail.com>> > wrote: > > > hey mashed taters w/ chocolate pudding sounds great to me :-) > > Cole > > > > > > On 11/8/06, Keedy <wkeedy@... <wkeedy%40earthlink.net>> > wrote: > >> > >> Not together, eh? Phooie. I thought we had some new competition/entries > >> as follow-up to our tasty discussions of last summer that originated > with > >> natto and peanut butter and potato chip sandwiches. > >> > >> > >> RE: vitalstim? > >> > >> But she loves to eat > >> now! Her favorite foods are still mashed potatoes and chocolate > pudding. > >> (Not together - HA!) > >> > >> Friends in CHARGE, > >> Marilyn Ogan > >> Mom of (14 yrs, CHARGE+ JRA) > >> Mom of Ken (17 yrs, Asperger's) > >> Wife of Rick > >> oganm@... <oganm%40insightbb.com> <oganm%40insightbb.com> > >> > >> Recent Activity > >> a.. 3New Members > >> Visit Your Group > >> Yahoo! TV > >> Staying in tonight? > >> > >> Check listings to > >> > >> see what is on. > >> > >> Biz Resources > >> Y! Small Business > >> > >> Articles, tools, > >> > >> forms, and more. > >> > >> Your Story > >> Opened in the 2020 > >> > >> The Yahoo! Time > >> > >> Capsule Project > >> . > >> > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2006 Report Share Posted November 9, 2006 i do that too and it's nummy! (but not all the time just sometimes) Cole > > does, however, put ketchup on the mashed potatoes! > > Friends in CHARGE, > Marilyn Ogan > Mom of (14 yrs, CHARGE+ JRA) > Mom of Ken (17 yrs, Asperger's) > Wife of Rick > oganm@... <oganm%40insightbb.com> > > Re: vitalstim? > > Not together, eh? Phooie. I thought we had some new competition/entries as > follow-up to our tasty discussions of last summer that originated with > natto > and peanut butter and potato chip sandwiches. > > > RE: vitalstim? > > But she loves to eat > now! Her favorite foods are still mashed potatoes and chocolate pudding. > (Not together - HA!) > > Friends in CHARGE, > Marilyn Ogan > Mom of (14 yrs, CHARGE+ JRA) > Mom of Ken (17 yrs, Asperger's) > Wife of Rick > oganm@... <oganm%40insightbb.com> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2006 Report Share Posted November 9, 2006 hahaha. so very sorry, my dear!!! I do stand corrected--soundly xo pam Re: vitalstim? i am SO not from texas - i live here i'm not FROM here. if you must know i'm FROM the united states of america tyvm. pfft Cole :-) > > Cole, > You are from Texas, what do you know about food, haha. > Xo > pam > > On 11/8/06 1:51 AM, " Angelcole " <Angelcole@...<Angelcole%40gmail.com>> > wrote: > > > hey mashed taters w/ chocolate pudding sounds great to me :-) > > Cole > > > > > > On 11/8/06, Keedy <wkeedy@... <wkeedy%40earthlink.net>> > wrote: > >> > >> Not together, eh? Phooie. I thought we had some new competition/entries > >> as follow-up to our tasty discussions of last summer that originated > with > >> natto and peanut butter and potato chip sandwiches. > >> > >> > >> RE: vitalstim? > >> > >> But she loves to eat > >> now! Her favorite foods are still mashed potatoes and chocolate > pudding. > >> (Not together - HA!) > >> > >> Friends in CHARGE, > >> Marilyn Ogan > >> Mom of (14 yrs, CHARGE+ JRA) > >> Mom of Ken (17 yrs, Asperger's) > >> Wife of Rick > >> oganm@... <oganm%40insightbb.com> <oganm%40insightbb.com> > >> > >> Recent Activity > >> a.. 3New Members > >> Visit Your Group > >> Yahoo! TV > >> Staying in tonight? > >> > >> Check listings to > >> > >> see what is on. > >> > >> Biz Resources > >> Y! Small Business > >> > >> Articles, tools, > >> > >> forms, and more. > >> > >> Your Story > >> Opened in the 2020 > >> > >> The Yahoo! Time > >> > >> Capsule Project > >> . > >> > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2006 Report Share Posted November 9, 2006 we have tried cital stim, did not work when eriak was trached, but are doing it agian now and whe no longer has a trach and it seems to be helping cathie Quote Link to comment Share on other sites More sharing options...
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