Guest guest Posted February 4, 2007 Report Share Posted February 4, 2007 Hi Sarabeth, If you go to groups.yahoo.com and go to the Charge message page, there is a 'search' box at the top. Just type in vital stim. I did that last time there was a question, and pulled up many messages full of experiences. I looked back a year, and I'm sure there were more. You can forward any message to your inbox to keep or print, or make a list of message numbers as you go along. Hope this helps. ;-) in Ma. (, 21 yrs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2007 Report Share Posted February 4, 2007 we did Vital Stim, it has been very effective for a lot of others, but was trached at the time and it did not help her much. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2007 Report Share Posted February 4, 2007 Hi there! I remember someone mentioning Vital Stem no too long ago. I was wondering what information you have on this and where I can get more! Our speech therapist is certified and is interested in trying it with Hope (6 months old - right facial palsy) How many of you or your children have ever tried this? ALL FEEDBACK WELCOME! THANKS IN ADVANCE!!! Sarabeth, , Faith 2 and Hope 6 months old CHARGE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2007 Report Share Posted February 5, 2007 linda u stole wat i was going to say ther eLOL look in archives coz i would imagine ther being alot i dotn have a prob but its usualy just same old same old lol > > we did Vital Stim, it has been very effective for a lot of others, but > > was trached at the time and it did not help her much. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2007 Report Share Posted February 5, 2007 Hi Sarabeth, If you have done a google search on VitalStim, you have probably already come across their site, but if not here it is: http://www.vitalstim.com My son is 18 months old and is currently undergoing VitalStim therapy. Tomorrow is his 4th therapy session (he gets it one time a week for an hour a session). Evan has an incomplete bilateral facial palsy (meaning different divisions of the facial nerve are affected on each side; his " smile muscles " are affected on the left). He also has an uncoordinated swallow, presumably due to cranial nerve palsy as well. I learned about VitalStim therapy awhile back, but his ENT recommended waiting to start the therapy until after Evan's cleft soft palate had been repaired (done this past November). The thinking was that strengthening his swallowing muscles wouldn't really help him swallow if he couldn't create a vacuum in his mouth because of the cleft. So far, we haven't seen much improvement in Evan's swallow (again, we've only had 3 sessions and it takes awhile to get results). We have seen two of the first " signs " our therapist said we would see--Evan's vocalizations are much louder now, and he is also tollerating smaller stimulus pulses (a sign the muscles are getting stronger--it takes less energy to stimulated the muscles to contract). How open your daughter's medical doctors are to VitalStim depends on where you live--in some parts of the country, VitalStim is more widely accepted than others. While it's use in treating dysphagia in adults has been studied and documented, it's use in children is more controversial. Starting age is particularly controversial--some advocate the earlier the better, while others take the approach that the child needs to be old enough to actively participate because learning to swallow is going to require some voluntary control. An " off-label " (meaning a use the device wasn't FDA approved for, but practitioners still use it for) use of VitalStim is treating Bell's palsy--basically a facial palsy of unknown cause. Our therapist has had success in treating facial palsys--getting eyes to close all the way, regaining some facial expression...that's an exciting thought for me. I remember very vividly asking one of Evan's doctors in the NICU if there was anything that could be done for the facial palsy--and him saying no, it would either improve on its own or stay. (mom to Evan, 18 months) Sarabeth wrote: Hi there! I remember someone mentioning Vital Stem no too long ago. I was wondering what information you have on this and where I can get more! Our speech therapist is certified and is interested in trying it with Hope (6 months old - right facial palsy) How many of you or your children have ever tried this? ALL FEEDBACK WELCOME! THANKS IN ADVANCE!!! Sarabeth, , Faith 2 and Hope 6 months old CHARGE --------------------------------- Have a burning question? Go to Yahoo! Answers and get answers from real people who know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2007 Report Share Posted February 5, 2007 We tried Vital Stim Therapy for my son a few times (he is now 4 1/2 yrs old). We did see some effect while he had the device on, but did not see it carry over when he was not using the device. It has worked for some though. You can find out more about therapists in your area who do vital stim by going to www. vitalstimtherapy.com. Jody Jody - mom to Ethan (ChARGE) and --------------------------------- Now that's room service! Choose from over 150,000 hotels in 45,000 destinations on Yahoo! Travel to find your fit. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2007 Report Share Posted February 20, 2007 Would love to hear from anyone who has successfully weaned off the G-tube with the use of a feeding clinic - Email me directly if you wish - Where did you go? At what age? How long did you stay at the clinic? What level of CHARGE did your child have? Thanks, Kim Mom to - age 7 with CHargE Kim Gilbert Senior Manager, Grant Services Orange County Public Schools x2322 gilberk@... ------------------------------ The information contained in this e-mail message is intended solely for the recipient(s) and may contain privileged information. Tampering with or altering the contents of this message is prohibited. This information is the same as any written document and may be subject to all rules governing public information according to Florida Statutes. Any message that falls under Chapter 119 shall not be altered in a manner that misrepresents the activities of Orange County Public Schools. [References: Florida State Constitution I.24, Florida State Statutes Chapter 119, and OCPS Management Directive A-9.] If you have received this message in error, or are not the named recipient notify the sender and delete this message from your computer. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2007 Report Share Posted February 20, 2007 My daughter, , attended an 8 week inpatient behavior based feeding program at Our Children's House at Baylor in Dallas, Texas, when she was 5 years old. It worked while we were there and for a few days at home, then refused to eat. The schedule was so structured that it made life hell for our family (5 meals for 25 minutes not with the family). is VERY stubborn and will do things on her own terms - I learned! I do feel like behavior based programs work - it just didn't for us. I'd be happy to talk about our experience. Lori Myers Spouse - Trent, Children - (9), (6, CHARGE Syndrome, Congenital Heart Defects/TOF Pulmonary Atresia/repaired, ECMO 12 days, Bi-lateral Choanal Atresia, Decanullated Trach, G-button, partial hearing loss, walking as of 12/22/04!, and Emma (4). Dallas, Texas RE: Vital Stem??? Would love to hear from anyone who has successfully weaned off the G-tube with the use of a feeding clinic - Email me directly if you wish - Where did you go? At what age? How long did you stay at the clinic? What level of CHARGE did your child have? Thanks, Kim Mom to - age 7 with CHargE Kim Gilbert Senior Manager, Grant Services Orange County Public Schools x2322 gilberk@... ------------------------------ The information contained in this e-mail message is intended solely for the recipient(s) and may contain privileged information. Tampering with or altering the contents of this message is prohibited. This information is the same as any written document and may be subject to all rules governing public information according to Florida Statutes. Any message that falls under Chapter 119 shall not be altered in a manner that misrepresents the activities of Orange County Public Schools. [References: Florida State Constitution I.24, Florida State Statutes Chapter 119, and OCPS Management Directive A-9.] If you have received this message in error, or are not the named recipient notify the sender and delete this message from your computer. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2007 Report Share Posted February 21, 2007 It was two weeks in Cleveland with Marcy Freed. took down and stayed at a motel. He had therapy one hour a day for the two weeks. At the end of that period he had a safe swallow study (it was not safe when they did it the first day they were there). Then it was a matter of our being very persistent with his eating. Over the next year he made tremendous progress, but I need to emphasize that we had to stay on top of making him eat. All the food had to be pureed (is that the right spelling?). Absolutely no texture. Yogurt, pudding - these were good. Now everything still has to be blended but he can tolerate some texture to his food. He was 14 I think. We took his tube out just after the Miami CHARGE conference. Tim S. Hartshorne Professor of Psychology Sloan Hall 215 Central Michigan University Mount Pleasant, MI 48859 (989)774-6479 office (989)774-2553 fax tim.hartshorne@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2007 Report Share Posted February 21, 2007 Sorry I hit enter by mistake...... I just wanted to echo something that others have been saying here. also had a double aortic arch repair done when he was under 6 months. We also had multible procedures done during single surgeries. With the number of surgeries had before coming to us I hated taking any chances with him being put under anesthesia. mom to (31) > > > Would love to hear from anyone who has successfully weaned off the > G-tube with the use of a feeding clinic - > > Email me directly if you wish - > > > > Where did you go? > > At what age? > > How long did you stay at the clinic? > > What level of CHARGE did your child have? > > > > Thanks, Kim > > Mom to - age 7 with CHargE > > > > Kim Gilbert > > Senior Manager, Grant Services > > Orange County Public Schools > > x2322 > > gilberk@... > > > > > > ------------------------------ > > The information contained in this e-mail message is intended solely for > the recipient(s) and may contain privileged information. Tampering with > or altering the contents of this message is prohibited. This information > is the same as any written document and may be subject to all rules > governing public information according to Florida Statutes. Any message > that falls under Chapter 119 shall not be altered in a manner that > misrepresents the activities of Orange County Public Schools. > [References: Florida State Constitution I.24, Florida State Statutes > Chapter 119, and OCPS Management Directive A-9.] If you have received > this message in error, or are not the named recipient notify the sender > and delete this message from your computer. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2007 Report Share Posted February 21, 2007 Hi Kim, My son, , is 31 now. We live in Central PA. did go from being fed with G-tube to eating by mouth. It took us about 6 months from start to time of G-tube being removed. But, for us it was 25 years ago and we got through the whole process at home. was institutionalized from birth till the age of 5 when he came to live with us. We got a diagnosis of CHARGE when he was 14 years old. He has involvemnt in all 6 areas. He had open heart to repair double aortic arch and surgery to divide his stomach because part of his stomach was not processing food and because of severe reflux and aspiration of food into his lungs. He also had a tach from infancy till the age of 2. All of these surgeries were done between birth and 7 months. had surgery to repair his stomach at the age of 4 1/2. It was done at Hershey Medical Center by a Dr. Balentine,(who has since pass away). was checked out by all the specalists to insure that he could safely begin eating by mouth. This was done thru testing before and after the surgery to repair his stomach. They basicly sent us home with knowledge of what to feed him but left the how up to us. Oh the how......the first food was all pureed with very mild flavor just like starting a baby. needed to awaken and develope all the muscles for eating and also his taste buds slowly. He was small for his age, size of 2 yr. old at the age of 5. He fit well in a high chair so that gave us some leverage. He fought us with all the strength in his little body at first. I had to surmise that because of his stomach being divided and having the trach that he was groomed not to put anything in his mouth. Well here we were now trying to make him put food in his mouth. How confused he must have been. One of our best tools were our other children. We played a taste game with putting all kinds of different tasting foods on the table. Honey, mayo, ketchup, mustard, pickle juice, peanut butter, we would all taste with our fingers. Making faces, putting our fingers in each others mouths. guessing what the food was. As progressed in his willingness we went up through the different textures of baby food to slowly small pieces of easily chewed foods. The first real food he ate was a hot dog. We were camping and roasting hotdogs on the fire. He, on his own, indicated he wanted some. We broke off tiny pieces and low and behold he was eating hotdogs. In the beginning we had to still do tube feeds. We had to measure every spoonfull that we got into him. Kept a daily chart. In the beginning would point to his tube indicating wanting to eat. The volume of his tube feedings weren't giving him a good sensation of being hungry. Hard to make a child eat when they don't feel hungry. We worked with doctors to slowly reduce amounts in tube feeding while still keeping a balance to insure he'd maintain his weitht. It was a slow process and was about 6 months before his tube was removed for good. Hopefully some of this information will be of use to you. Being so long ago we weren't given the option of working with a feeding clinic. mom to jason (31) > > > Would love to hear from anyone who has successfully weaned off the > G-tube with the use of a feeding clinic - > > Email me directly if you wish - > > > > Where did you go? > > At what age? > > How long did you stay at the clinic? > > What level of CHARGE did your child have? > > > > Thanks, Kim > > Mom to - age 7 with CHargE > > > > Kim Gilbert > > Senior Manager, Grant Services > > Orange County Public Schools > > x2322 > > gilberk@... > > > > > > ------------------------------ > > The information contained in this e-mail message is intended solely for > the recipient(s) and may contain privileged information. Tampering with > or altering the contents of this message is prohibited. This information > is the same as any written document and may be subject to all rules > governing public information according to Florida Statutes. Any message > that falls under Chapter 119 shall not be altered in a manner that > misrepresents the activities of Orange County Public Schools. > [References: Florida State Constitution I.24, Florida State Statutes > Chapter 119, and OCPS Management Directive A-9.] If you have received > this message in error, or are not the named recipient notify the sender > and delete this message from your computer. > > Quote Link to comment Share on other sites More sharing options...
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