Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 , That does sound exciting. What are the fees and were you able to get insurance to pay? Every time Dylan gets excited by food, he ends up on an off cycle. I am not sure if it is diet stuff, such as casein and gluten alleriges, or if it is just stressing him in some other way. He never shows pneumonia on x-ray, but gets fever and cough often. If he wants anything now he wants solids, not baby food, but he can't chew it. Until I know if it is allergy or not I would hate to pursue it, because if he ate the wrong foods and did poorly we would think it was the eating and not push hard enough. So many things to consider. I am glad it is working for !!!! Kim ---------- > >To: chargelist <CHARGE > >Subject: estim progress >Date: Fri, Aug 16, 2002, 10:47 AM > > Hi everyone. I don't post often, but wanted to let everyone know that > our son (age 13) is progressing very well with oral eating since > we came back from the electric stim therapy in Cleveland. We spent two > weeks there, had six sessions a week. We spent about 2-3 hours at the > hospital each day. He did okay while there, but when he got back home in > his own environment he really took off! > > After 2 weeks of stim therapy he passed his barium swallow (which he > failed at the beginning of the therapy) for all consistencies except > pudding (thick and sticky). Marcy Freed says even that will probably > come with time and experience. He is now eating an average of 1/3 of his > calories by mouth daily, and we have only been home two weeks! This is > amazing after 11 years of NPO. > > We are really determined to stay consistent and aggressive with this. > Once we get the volume up, we will begin to increase texture, encourage > chewing, etc. Right now he is eating mostly baby food with salt and > margarine added in for flavor and calories. Marcy did say at the end > that those families who go home and are aggressive get results, and > those who can't find the time to push it, don't. We are generally in the > latter category time-wise, but are determined to keep at it! > > Just wanted to let everyone know that this went very well for us, and > that Marcy has had 100 percent success with kids with CHARGE. I think > is the oldest child with CHARGE she has actually treated (although > while we were there, there was another 13 year old (cancer survivor) and > a 17 year old with another genetic syndrome being treated). . Most have > been very young and still quite medically fragile. She was amazed at how > healthy was, and I told her that many of the kids grow out of the > life threatening health stuff by about age 3 or 4. > > Her newest device is in the approval stages, and she hopes to market it > and do regional trainings within the year. Hopefully, with devices and > trainings available, people will not have to travel to Cleveland for two > weeks to get this therapy, in the future. I think it will spread > quickly, as it also has great applications for people recovering from > strokes and all kinds of other things. > > Anyway, this is me putting a plug in for this program. If can do > it at this age, I think most of our kids could do it! > > BTW I am hoping to start a listserv for people who have gone through > this program, to swap ideas on how to transition from tube to oral > feeding. I think if we shared our ideas, we could all stop reinventing > the wheel! Let me know (privately) if you would like to be a part of > this, and I will set something up. > > Thanks! Hartshorne, mom to , 13, ChArGE. > > > Subject: RE: Hartshorne progress > Date: Fri, 16 Aug 2002 11:36:09 -0400 > > To: " ' Hartshorne' " > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 , That does sound exciting. What are the fees and were you able to get insurance to pay? Every time Dylan gets excited by food, he ends up on an off cycle. I am not sure if it is diet stuff, such as casein and gluten alleriges, or if it is just stressing him in some other way. He never shows pneumonia on x-ray, but gets fever and cough often. If he wants anything now he wants solids, not baby food, but he can't chew it. Until I know if it is allergy or not I would hate to pursue it, because if he ate the wrong foods and did poorly we would think it was the eating and not push hard enough. So many things to consider. I am glad it is working for !!!! Kim ---------- > >To: chargelist <CHARGE > >Subject: estim progress >Date: Fri, Aug 16, 2002, 10:47 AM > > Hi everyone. I don't post often, but wanted to let everyone know that > our son (age 13) is progressing very well with oral eating since > we came back from the electric stim therapy in Cleveland. We spent two > weeks there, had six sessions a week. We spent about 2-3 hours at the > hospital each day. He did okay while there, but when he got back home in > his own environment he really took off! > > After 2 weeks of stim therapy he passed his barium swallow (which he > failed at the beginning of the therapy) for all consistencies except > pudding (thick and sticky). Marcy Freed says even that will probably > come with time and experience. He is now eating an average of 1/3 of his > calories by mouth daily, and we have only been home two weeks! This is > amazing after 11 years of NPO. > > We are really determined to stay consistent and aggressive with this. > Once we get the volume up, we will begin to increase texture, encourage > chewing, etc. Right now he is eating mostly baby food with salt and > margarine added in for flavor and calories. Marcy did say at the end > that those families who go home and are aggressive get results, and > those who can't find the time to push it, don't. We are generally in the > latter category time-wise, but are determined to keep at it! > > Just wanted to let everyone know that this went very well for us, and > that Marcy has had 100 percent success with kids with CHARGE. I think > is the oldest child with CHARGE she has actually treated (although > while we were there, there was another 13 year old (cancer survivor) and > a 17 year old with another genetic syndrome being treated). . Most have > been very young and still quite medically fragile. She was amazed at how > healthy was, and I told her that many of the kids grow out of the > life threatening health stuff by about age 3 or 4. > > Her newest device is in the approval stages, and she hopes to market it > and do regional trainings within the year. Hopefully, with devices and > trainings available, people will not have to travel to Cleveland for two > weeks to get this therapy, in the future. I think it will spread > quickly, as it also has great applications for people recovering from > strokes and all kinds of other things. > > Anyway, this is me putting a plug in for this program. If can do > it at this age, I think most of our kids could do it! > > BTW I am hoping to start a listserv for people who have gone through > this program, to swap ideas on how to transition from tube to oral > feeding. I think if we shared our ideas, we could all stop reinventing > the wheel! Let me know (privately) if you would like to be a part of > this, and I will set something up. > > Thanks! Hartshorne, mom to , 13, ChArGE. > > > Subject: RE: Hartshorne progress > Date: Fri, 16 Aug 2002 11:36:09 -0400 > > To: " ' Hartshorne' " > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2002 Report Share Posted August 16, 2002 , That does sound exciting. What are the fees and were you able to get insurance to pay? Every time Dylan gets excited by food, he ends up on an off cycle. I am not sure if it is diet stuff, such as casein and gluten alleriges, or if it is just stressing him in some other way. He never shows pneumonia on x-ray, but gets fever and cough often. If he wants anything now he wants solids, not baby food, but he can't chew it. Until I know if it is allergy or not I would hate to pursue it, because if he ate the wrong foods and did poorly we would think it was the eating and not push hard enough. So many things to consider. I am glad it is working for !!!! Kim ---------- > >To: chargelist <CHARGE > >Subject: estim progress >Date: Fri, Aug 16, 2002, 10:47 AM > > Hi everyone. I don't post often, but wanted to let everyone know that > our son (age 13) is progressing very well with oral eating since > we came back from the electric stim therapy in Cleveland. We spent two > weeks there, had six sessions a week. We spent about 2-3 hours at the > hospital each day. He did okay while there, but when he got back home in > his own environment he really took off! > > After 2 weeks of stim therapy he passed his barium swallow (which he > failed at the beginning of the therapy) for all consistencies except > pudding (thick and sticky). Marcy Freed says even that will probably > come with time and experience. He is now eating an average of 1/3 of his > calories by mouth daily, and we have only been home two weeks! This is > amazing after 11 years of NPO. > > We are really determined to stay consistent and aggressive with this. > Once we get the volume up, we will begin to increase texture, encourage > chewing, etc. Right now he is eating mostly baby food with salt and > margarine added in for flavor and calories. Marcy did say at the end > that those families who go home and are aggressive get results, and > those who can't find the time to push it, don't. We are generally in the > latter category time-wise, but are determined to keep at it! > > Just wanted to let everyone know that this went very well for us, and > that Marcy has had 100 percent success with kids with CHARGE. I think > is the oldest child with CHARGE she has actually treated (although > while we were there, there was another 13 year old (cancer survivor) and > a 17 year old with another genetic syndrome being treated). . Most have > been very young and still quite medically fragile. She was amazed at how > healthy was, and I told her that many of the kids grow out of the > life threatening health stuff by about age 3 or 4. > > Her newest device is in the approval stages, and she hopes to market it > and do regional trainings within the year. Hopefully, with devices and > trainings available, people will not have to travel to Cleveland for two > weeks to get this therapy, in the future. I think it will spread > quickly, as it also has great applications for people recovering from > strokes and all kinds of other things. > > Anyway, this is me putting a plug in for this program. If can do > it at this age, I think most of our kids could do it! > > BTW I am hoping to start a listserv for people who have gone through > this program, to swap ideas on how to transition from tube to oral > feeding. I think if we shared our ideas, we could all stop reinventing > the wheel! Let me know (privately) if you would like to be a part of > this, and I will set something up. > > Thanks! Hartshorne, mom to , 13, ChArGE. > > > Subject: RE: Hartshorne progress > Date: Fri, 16 Aug 2002 11:36:09 -0400 > > To: " ' Hartshorne' " > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2002 Report Share Posted August 17, 2002 , This is wonderful news I really wish there was something like this over here in the UK as I despair that Jack will ever eat normal food. Elaine, wife to Jim, Mum to Elise 10yrs & Jack 5yrs CHaRGE Dumfries,Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2002 Report Share Posted August 17, 2002 , This is wonderful news I really wish there was something like this over here in the UK as I despair that Jack will ever eat normal food. Elaine, wife to Jim, Mum to Elise 10yrs & Jack 5yrs CHaRGE Dumfries,Scotland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2002 Report Share Posted August 17, 2002 I don't mean to sound negative, but the following statement is not true: >>Just wanted to let everyone know that this went very well for us, and >> that Marcy has had 100 percent success with kids with CHARGE. The electric stim did not work for my daughter (who has CHARGE and was trached at the time). In fact, Aubrey did much better on her initial swallow study there than she did on the final one when we left. In addition, I don't believe it went well for the majority of the other families that were there at the same time, and there were other kids with CHARGE there. It has been a couple years since we were there for the therapy. Having said this, I don't mean to discourage anyone from trying the therapy and I believe it probably does help some kids, but not 100%. I would be curious to see if it has helped any trached kids. I just want to make sure people get the right information. If Marcy is indicating it has helped 100% of the CHARGE kids, that is just simply not true. Bradley RE: Hartshorne progress Date: Fri, 16 Aug 2002 11:36:09 -0400 To: " ' Hartshorne' " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2002 Report Share Posted August 17, 2002 I don't mean to sound negative, but the following statement is not true: >>Just wanted to let everyone know that this went very well for us, and >> that Marcy has had 100 percent success with kids with CHARGE. The electric stim did not work for my daughter (who has CHARGE and was trached at the time). In fact, Aubrey did much better on her initial swallow study there than she did on the final one when we left. In addition, I don't believe it went well for the majority of the other families that were there at the same time, and there were other kids with CHARGE there. It has been a couple years since we were there for the therapy. Having said this, I don't mean to discourage anyone from trying the therapy and I believe it probably does help some kids, but not 100%. I would be curious to see if it has helped any trached kids. I just want to make sure people get the right information. If Marcy is indicating it has helped 100% of the CHARGE kids, that is just simply not true. Bradley RE: Hartshorne progress Date: Fri, 16 Aug 2002 11:36:09 -0400 To: " ' Hartshorne' " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2002 Report Share Posted August 18, 2002 hi gang, Bradley is right, we were there w/ his aubrey and the e-stim did not work for us either, made no difference. funny this is talked about b/c lsat week we were with sara johnsons office (lori overland) and we talked about it and she said her feelings were, referring to erika, that if there is not a swallow already then it probably would not work, she said now that erika is swallowing so muich better it may be somehting we consider in the future. bu we spent 3 weeks, and a lot of money to be there and 3 dilitations, and it really did not make any improvemnts, we came home no beter than when we went. if marcy is saying 100% she is misleading you. cathie, mom to erika Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2002 Report Share Posted August 18, 2002 hi gang, Bradley is right, we were there w/ his aubrey and the e-stim did not work for us either, made no difference. funny this is talked about b/c lsat week we were with sara johnsons office (lori overland) and we talked about it and she said her feelings were, referring to erika, that if there is not a swallow already then it probably would not work, she said now that erika is swallowing so muich better it may be somehting we consider in the future. bu we spent 3 weeks, and a lot of money to be there and 3 dilitations, and it really did not make any improvemnts, we came home no beter than when we went. if marcy is saying 100% she is misleading you. cathie, mom to erika Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2002 Report Share Posted August 18, 2002 hi gang, Bradley is right, we were there w/ his aubrey and the e-stim did not work for us either, made no difference. funny this is talked about b/c lsat week we were with sara johnsons office (lori overland) and we talked about it and she said her feelings were, referring to erika, that if there is not a swallow already then it probably would not work, she said now that erika is swallowing so muich better it may be somehting we consider in the future. bu we spent 3 weeks, and a lot of money to be there and 3 dilitations, and it really did not make any improvemnts, we came home no beter than when we went. if marcy is saying 100% she is misleading you. cathie, mom to erika Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2002 Report Share Posted August 19, 2002 , You quoted Marcy as saying that it takes a lot of work after e-stim. I thought I would just share our experience. We went twice for e-stim, once when Bryce was 3 1/2 and then again when he was 4. We stayed a total of 5 weeks. For us it was very helpful (although I also got the impression that Marcy tends to overstate its' success.) But I am convinced Bryce would not be eating now had we not gone and he eats everything. But it took about 15 months of long, slow eating and working with a feeding specialist to be totally oral. The drinking took the longest for him. I think it was frightening to drink after years of aspirating on his own saliva. The feeding team was able to help with the oral motor issues that had developed as a result of years of being NPO (and cleft palate and not talking). They had not been able to help with the swallowing though until afte e-stim. Anyway, hang in thereI just wanted to give you an idea of how long the process was for us. But now, he eats a little slower than other kids but it's pretty normal! Hang in there! Deedee Ungetheim and Bryce age 5 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2002 Report Share Posted August 19, 2002 , You quoted Marcy as saying that it takes a lot of work after e-stim. I thought I would just share our experience. We went twice for e-stim, once when Bryce was 3 1/2 and then again when he was 4. We stayed a total of 5 weeks. For us it was very helpful (although I also got the impression that Marcy tends to overstate its' success.) But I am convinced Bryce would not be eating now had we not gone and he eats everything. But it took about 15 months of long, slow eating and working with a feeding specialist to be totally oral. The drinking took the longest for him. I think it was frightening to drink after years of aspirating on his own saliva. The feeding team was able to help with the oral motor issues that had developed as a result of years of being NPO (and cleft palate and not talking). They had not been able to help with the swallowing though until afte e-stim. Anyway, hang in thereI just wanted to give you an idea of how long the process was for us. But now, he eats a little slower than other kids but it's pretty normal! Hang in there! Deedee Ungetheim and Bryce age 5 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2002 Report Share Posted August 19, 2002 Deedee, Thanks so much for sharing this, I am always encouraged after reading about Bryce's success. I truly believe Kennedy will eat some day, she does very well now with ice cream mostly, but is starting to take bites off of food and " let it be " in her mouth for a bit before spitting it out. This is huge for her, she really didn't like anything in there at all. She is also holding a cup appropriately and bringing it to her lips, tipping it slightly and taking sips. I think a lot of this has come from being at Daycare with the other kids and sitting with them for snack & lunch. I wonder how Marcy's treatments would affect Kennedy, where she seems to be so close, and totally verbal with speaking, etc and doing so well in that area. The interest is definitely there, too (she's WAY too nosey not to eat eventually) ~ Weir Mom to Kennedy, 4yr old CHARGEr, 13, 11, and wife to Graeme New Brunswick, Canada Visit the Weir Website: http://personal.nbnet.nb.ca/gweir ICQ# 1426476 Re: estim progress , You quoted Marcy as saying that it takes a lot of work after e-stim. I thought I would just share our experience. We went twice for e-stim, once when Bryce was 3 1/2 and then again when he was 4. We stayed a total of 5 weeks. For us it was very helpful (although I also got the impression that Marcy tends to overstate its' success.) But I am convinced Bryce would not be eating now had we not gone and he eats everything. But it took about 15 months of long, slow eating and working with a feeding specialist to be totally oral. The drinking took the longest for him. I think it was frightening to drink after years of aspirating on his own saliva. The feeding team was able to help with the oral motor issues that had developed as a result of years of being NPO (and cleft palate and not talking). They had not been able to help with the swallowing though until afte e-stim. Anyway, hang in thereI just wanted to give you an idea of how long the process was for us. But now, he eats a little slower than other kids but it's pretty normal! Hang in there! Deedee Ungetheim and Bryce age 5 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2002 Report Share Posted August 19, 2002 Deedee, Thanks so much for sharing this, I am always encouraged after reading about Bryce's success. I truly believe Kennedy will eat some day, she does very well now with ice cream mostly, but is starting to take bites off of food and " let it be " in her mouth for a bit before spitting it out. This is huge for her, she really didn't like anything in there at all. She is also holding a cup appropriately and bringing it to her lips, tipping it slightly and taking sips. I think a lot of this has come from being at Daycare with the other kids and sitting with them for snack & lunch. I wonder how Marcy's treatments would affect Kennedy, where she seems to be so close, and totally verbal with speaking, etc and doing so well in that area. The interest is definitely there, too (she's WAY too nosey not to eat eventually) ~ Weir Mom to Kennedy, 4yr old CHARGEr, 13, 11, and wife to Graeme New Brunswick, Canada Visit the Weir Website: http://personal.nbnet.nb.ca/gweir ICQ# 1426476 Re: estim progress , You quoted Marcy as saying that it takes a lot of work after e-stim. I thought I would just share our experience. We went twice for e-stim, once when Bryce was 3 1/2 and then again when he was 4. We stayed a total of 5 weeks. For us it was very helpful (although I also got the impression that Marcy tends to overstate its' success.) But I am convinced Bryce would not be eating now had we not gone and he eats everything. But it took about 15 months of long, slow eating and working with a feeding specialist to be totally oral. The drinking took the longest for him. I think it was frightening to drink after years of aspirating on his own saliva. The feeding team was able to help with the oral motor issues that had developed as a result of years of being NPO (and cleft palate and not talking). They had not been able to help with the swallowing though until afte e-stim. Anyway, hang in thereI just wanted to give you an idea of how long the process was for us. But now, he eats a little slower than other kids but it's pretty normal! Hang in there! Deedee Ungetheim and Bryce age 5 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2002 Report Share Posted August 19, 2002 Deedee, Thanks so much for sharing this, I am always encouraged after reading about Bryce's success. I truly believe Kennedy will eat some day, she does very well now with ice cream mostly, but is starting to take bites off of food and " let it be " in her mouth for a bit before spitting it out. This is huge for her, she really didn't like anything in there at all. She is also holding a cup appropriately and bringing it to her lips, tipping it slightly and taking sips. I think a lot of this has come from being at Daycare with the other kids and sitting with them for snack & lunch. I wonder how Marcy's treatments would affect Kennedy, where she seems to be so close, and totally verbal with speaking, etc and doing so well in that area. The interest is definitely there, too (she's WAY too nosey not to eat eventually) ~ Weir Mom to Kennedy, 4yr old CHARGEr, 13, 11, and wife to Graeme New Brunswick, Canada Visit the Weir Website: http://personal.nbnet.nb.ca/gweir ICQ# 1426476 Re: estim progress , You quoted Marcy as saying that it takes a lot of work after e-stim. I thought I would just share our experience. We went twice for e-stim, once when Bryce was 3 1/2 and then again when he was 4. We stayed a total of 5 weeks. For us it was very helpful (although I also got the impression that Marcy tends to overstate its' success.) But I am convinced Bryce would not be eating now had we not gone and he eats everything. But it took about 15 months of long, slow eating and working with a feeding specialist to be totally oral. The drinking took the longest for him. I think it was frightening to drink after years of aspirating on his own saliva. The feeding team was able to help with the oral motor issues that had developed as a result of years of being NPO (and cleft palate and not talking). They had not been able to help with the swallowing though until afte e-stim. Anyway, hang in thereI just wanted to give you an idea of how long the process was for us. But now, he eats a little slower than other kids but it's pretty normal! Hang in there! Deedee Ungetheim and Bryce age 5 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2002 Report Share Posted August 19, 2002 - What was your daughter's cognitive ability at this age? What was her developmental age? My daughter saw Marcy last summer at age 2. We pass swallow studies not (praise the lord) but the feeding is very slow. I've always questioned because has never been hungry. She doesn't know or understand the concept. I'm not sure at age 3 that she would. What is your call on this? Thanks, Kim Gilbert, age 3 Re: estim progress I don't post often, but thought I'd jump in here. My daughter had e-stim therapy with Marcy when she was 4- 1/2. It was miraculous for her. She left Cleveland with a normal swallow. When we had arrived she was aspirating all consistencies and was exclusively g-tube fed. We arrived home and worked very hard/aggressively to get her off of the tube feeds. First of all she really didn't understand that she could satisfy hunger orally. One day (about 2 weeks after arriving home from Cleveland) I didn't give her a tube feed all day (her overnight feed shut off in the a.m. so she normally wasn't hungry until afternoon anyway) finally at about 4:00 she decided she would eat orally. At the time this basically consisted of me giving her Pediasure in a large 60 cc syringe. Well, she finished one, asked for another, and another, and another. Within a couple of hours she had taken in 400 ccs! That is when it clicked for her that this oral eating thing would satisfy her hunger. After that it was no time before we had her " eating " 100 percent orally. One key was to get rid of her continuous night feed. Polly Tarbell at Kluge gave me great advice on how to do this, as my daughter really couldn't afford to loose weight and needed the calories. Basically what I did is feed her a tiny bit in the a.m. early....then I cut it out of the night feed that night. Surprisingly once I started to do this it only took about 4 days to get rid of the night feeds she had been so dependent on. I think that even the action of swallowing the food and having it move down her esophagus strengthened her muscles so much that her reflux was reduced to the point that she could tolerate the larger feedings during the day --getting in those needed calories. Also interesting is the fact that on her swallow study in Cleveland it was noted that she had extremely slow peristalisis in her esophagus. Marcy recommeded a followup study in Boston when we returned. By the time we had the study...a few weeks later...her peristalisis was normal. I about fell out of my chair and said to the radiologist " are you sure? " He said, " yes, it is absolutely normal. " (He knew my daughter because he had done all of her swallow studies. He was amazed at what the e-stim had done for her.) She had to swallow 5ccs of barium stuff lying down for them to check the movement in her esophagus. So, the only thing we can figure is again...the act of swallowing food and having it travel down her esophagus toned those muscles so their function became normal. Before you think this all sounds too easy, I assure you it was not. I wanted to pull my hair out many times. It took tons of work, including me going to her school every day for lunch, arriving early for snack, etc.... And, we are not finished. My daughter will turn 7 in a week. She has had her g-tube out over a year. She still eats predominantly soft foods, and drinks ok. I think the fact that her oral motor skills aren't developed with speech (she is deaf and signs) makes the feeding skills come more slowly. We are getting ready to consult a feeding specialist here for some therapy. So...that is our story. -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2002 Report Share Posted August 19, 2002 I don't post often, but thought I'd jump in here. My daughter had e-stim therapy with Marcy when she was 4- 1/2. It was miraculous for her. She left Cleveland with a normal swallow. When we had arrived she was aspirating all consistencies and was exclusively g-tube fed. We arrived home and worked very hard/aggressively to get her off of the tube feeds. First of all she really didn't understand that she could satisfy hunger orally. One day (about 2 weeks after arriving home from Cleveland) I didn't give her a tube feed all day (her overnight feed shut off in the a.m. so she normally wasn't hungry until afternoon anyway) finally at about 4:00 she decided she would eat orally. At the time this basically consisted of me giving her Pediasure in a large 60 cc syringe. Well, she finished one, asked for another, and another, and another. Within a couple of hours she had taken in 400 ccs! That is when it clicked for her that this oral eating thing would satisfy her hunger. After that it was no time before we had her " eating " 100 percent orally. One key was to get rid of her continuous night feed. Polly Tarbell at Kluge gave me great advice on how to do this, as my daughter really couldn't afford to loose weight and needed the calories. Basically what I did is feed her a tiny bit in the a.m. early....then I cut it out of the night feed that night. Surprisingly once I started to do this it only took about 4 days to get rid of the night feeds she had been so dependent on. I think that even the action of swallowing the food and having it move down her esophagus strengthened her muscles so much that her reflux was reduced to the point that she could tolerate the larger feedings during the day --getting in those needed calories. Also interesting is the fact that on her swallow study in Cleveland it was noted that she had extremely slow peristalisis in her esophagus. Marcy recommeded a followup study in Boston when we returned. By the time we had the study...a few weeks later...her peristalisis was normal. I about fell out of my chair and said to the radiologist " are you sure? " He said, " yes, it is absolutely normal. " (He knew my daughter because he had done all of her swallow studies. He was amazed at what the e-stim had done for her.) She had to swallow 5ccs of barium stuff lying down for them to check the movement in her esophagus. So, the only thing we can figure is again...the act of swallowing food and having it travel down her esophagus toned those muscles so their function became normal. Before you think this all sounds too easy, I assure you it was not. I wanted to pull my hair out many times. It took tons of work, including me going to her school every day for lunch, arriving early for snack, etc.... And, we are not finished. My daughter will turn 7 in a week. She has had her g-tube out over a year. She still eats predominantly soft foods, and drinks ok. I think the fact that her oral motor skills aren't developed with speech (she is deaf and signs) makes the feeding skills come more slowly. We are getting ready to consult a feeding specialist here for some therapy. So...that is our story. -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2002 Report Share Posted August 19, 2002 I don't post often, but thought I'd jump in here. My daughter had e-stim therapy with Marcy when she was 4- 1/2. It was miraculous for her. She left Cleveland with a normal swallow. When we had arrived she was aspirating all consistencies and was exclusively g-tube fed. We arrived home and worked very hard/aggressively to get her off of the tube feeds. First of all she really didn't understand that she could satisfy hunger orally. One day (about 2 weeks after arriving home from Cleveland) I didn't give her a tube feed all day (her overnight feed shut off in the a.m. so she normally wasn't hungry until afternoon anyway) finally at about 4:00 she decided she would eat orally. At the time this basically consisted of me giving her Pediasure in a large 60 cc syringe. Well, she finished one, asked for another, and another, and another. Within a couple of hours she had taken in 400 ccs! That is when it clicked for her that this oral eating thing would satisfy her hunger. After that it was no time before we had her " eating " 100 percent orally. One key was to get rid of her continuous night feed. Polly Tarbell at Kluge gave me great advice on how to do this, as my daughter really couldn't afford to loose weight and needed the calories. Basically what I did is feed her a tiny bit in the a.m. early....then I cut it out of the night feed that night. Surprisingly once I started to do this it only took about 4 days to get rid of the night feeds she had been so dependent on. I think that even the action of swallowing the food and having it move down her esophagus strengthened her muscles so much that her reflux was reduced to the point that she could tolerate the larger feedings during the day --getting in those needed calories. Also interesting is the fact that on her swallow study in Cleveland it was noted that she had extremely slow peristalisis in her esophagus. Marcy recommeded a followup study in Boston when we returned. By the time we had the study...a few weeks later...her peristalisis was normal. I about fell out of my chair and said to the radiologist " are you sure? " He said, " yes, it is absolutely normal. " (He knew my daughter because he had done all of her swallow studies. He was amazed at what the e-stim had done for her.) She had to swallow 5ccs of barium stuff lying down for them to check the movement in her esophagus. So, the only thing we can figure is again...the act of swallowing food and having it travel down her esophagus toned those muscles so their function became normal. Before you think this all sounds too easy, I assure you it was not. I wanted to pull my hair out many times. It took tons of work, including me going to her school every day for lunch, arriving early for snack, etc.... And, we are not finished. My daughter will turn 7 in a week. She has had her g-tube out over a year. She still eats predominantly soft foods, and drinks ok. I think the fact that her oral motor skills aren't developed with speech (she is deaf and signs) makes the feeding skills come more slowly. We are getting ready to consult a feeding specialist here for some therapy. So...that is our story. -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2002 Report Share Posted August 19, 2002 I don't post often, but thought I'd jump in here. My daughter had e-stim therapy with Marcy when she was 4- 1/2. It was miraculous for her. She left Cleveland with a normal swallow. When we had arrived she was aspirating all consistencies and was exclusively g-tube fed. We arrived home and worked very hard/aggressively to get her off of the tube feeds. First of all she really didn't understand that she could satisfy hunger orally. One day (about 2 weeks after arriving home from Cleveland) I didn't give her a tube feed all day (her overnight feed shut off in the a.m. so she normally wasn't hungry until afternoon anyway) finally at about 4:00 she decided she would eat orally. At the time this basically consisted of me giving her Pediasure in a large 60 cc syringe. Well, she finished one, asked for another, and another, and another. Within a couple of hours she had taken in 400 ccs! That is when it clicked for her that this oral eating thing would satisfy her hunger. After that it was no time before we had her " eating " 100 percent orally. One key was to get rid of her continuous night feed. Polly Tarbell at Kluge gave me great advice on how to do this, as my daughter really couldn't afford to loose weight and needed the calories. Basically what I did is feed her a tiny bit in the a.m. early....then I cut it out of the night feed that night. Surprisingly once I started to do this it only took about 4 days to get rid of the night feeds she had been so dependent on. I think that even the action of swallowing the food and having it move down her esophagus strengthened her muscles so much that her reflux was reduced to the point that she could tolerate the larger feedings during the day --getting in those needed calories. Also interesting is the fact that on her swallow study in Cleveland it was noted that she had extremely slow peristalisis in her esophagus. Marcy recommeded a followup study in Boston when we returned. By the time we had the study...a few weeks later...her peristalisis was normal. I about fell out of my chair and said to the radiologist " are you sure? " He said, " yes, it is absolutely normal. " (He knew my daughter because he had done all of her swallow studies. He was amazed at what the e-stim had done for her.) She had to swallow 5ccs of barium stuff lying down for them to check the movement in her esophagus. So, the only thing we can figure is again...the act of swallowing food and having it travel down her esophagus toned those muscles so their function became normal. Before you think this all sounds too easy, I assure you it was not. I wanted to pull my hair out many times. It took tons of work, including me going to her school every day for lunch, arriving early for snack, etc.... And, we are not finished. My daughter will turn 7 in a week. She has had her g-tube out over a year. She still eats predominantly soft foods, and drinks ok. I think the fact that her oral motor skills aren't developed with speech (she is deaf and signs) makes the feeding skills come more slowly. We are getting ready to consult a feeding specialist here for some therapy. So...that is our story. -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2002 Report Share Posted August 19, 2002 Kim, Her developmental age at the time was delayed by maybe 6 months to a year at most. I think that at age 3 your daughter would understand IF she felt the hunger. I know that there is some question as to whether or not some kids actually feel the hunger. With my own daugher I think she has to be pretty hungry before recognizing it. I know there are medications you can take to improve hunger. They are usually given to cancer patients and the like who have reduced hunger due to treatment. Marcy once mentioned to me that maybe I should consider it for my daughter because I felt (and still do) that she does not feel hunger exactly like most of us do. We are doing ok so I didn't investigate it. I really don't like the idea of giving drugs if we can handle it other ways. I did an internet search on weight gain and appetitie stimulants---all I really came up with was weight loss and the like. I was looking for foods that would naturally stimulate appetitie. So, if anyone knows of any please let me know! And, having the feeding progress show is understandable. I expressed frustration to Polly Tarbell at Kluge just a few months ago when I thought maybe I needed to bring my daughter to learn how to chew. Polly told me she thought my daughter was doing great and to remember that it takes a long time to develop those skills - years....which is what it is taking! She did have some recommendations which I have tried..... I hope this helps. -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2002 Report Share Posted August 19, 2002 , Thanks for sharing, that is very encouraging! ~ Weir Mom to Kennedy, 4yr old CHARGEr, 13, 11, and wife to Graeme New Brunswick, Canada Visit the Weir Website: http://personal.nbnet.nb.ca/gweir ICQ# 1426476 Re: estim progress I don't post often, but thought I'd jump in here. My daughter had e-stim therapy with Marcy when she was 4- 1/2. It was miraculous for her. She left Cleveland with a normal swallow. When we had arrived she was aspirating all consistencies and was exclusively g-tube fed. We arrived home and worked very hard/aggressively to get her off of the tube feeds. First of all she really didn't understand that she could satisfy hunger orally. One day (about 2 weeks after arriving home from Cleveland) I didn't give her a tube feed all day (her overnight feed shut off in the a.m. so she normally wasn't hungry until afternoon anyway) finally at about 4:00 she decided she would eat orally. At the time this basically consisted of me giving her Pediasure in a large 60 cc syringe. Well, she finished one, asked for another, and another, and another. Within a couple of hours she had taken in 400 ccs! That is when it clicked for her that this oral eating thing would satisfy her hunger. After that it was no time before we had her " eating " 100 percent orally. One key was to get rid of her continuous night feed. Polly Tarbell at Kluge gave me great advice on how to do this, as my daughter really couldn't afford to loose weight and needed the calories. Basically what I did is feed her a tiny bit in the a.m. early....then I cut it out of the night feed that night. Surprisingly once I started to do this it only took about 4 days to get rid of the night feeds she had been so dependent on. I think that even the action of swallowing the food and having it move down her esophagus strengthened her muscles so much that her reflux was reduced to the point that she could tolerate the larger feedings during the day --getting in those needed calories. Also interesting is the fact that on her swallow study in Cleveland it was noted that she had extremely slow peristalisis in her esophagus. Marcy recommeded a followup study in Boston when we returned. By the time we had the study...a few weeks later...her peristalisis was normal. I about fell out of my chair and said to the radiologist " are you sure? " He said, " yes, it is absolutely normal. " (He knew my daughter because he had done all of her swallow studies. He was amazed at what the e-stim had done for her.) She had to swallow 5ccs of barium stuff lying down for them to check the movement in her esophagus. So, the only thing we can figure is again...the act of swallowing food and having it travel down her esophagus toned those muscles so their function became normal. Before you think this all sounds too easy, I assure you it was not. I wanted to pull my hair out many times. It took tons of work, including me going to her school every day for lunch, arriving early for snack, etc.... And, we are not finished. My daughter will turn 7 in a week. She has had her g-tube out over a year. She still eats predominantly soft foods, and drinks ok. I think the fact that her oral motor skills aren't developed with speech (she is deaf and signs) makes the feeding skills come more slowly. We are getting ready to consult a feeding specialist here for some therapy. So...that is our story. -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2002 Report Share Posted August 20, 2002 Thought I'd add my 2 cents. The estim didn't help my son , now age 5. It would work for about three weeks, then the swallow would regress. I think he might have been too young considering the severity of his swallowing problem. Now he might do better, but he is still aspirating and I am not sure if going back will help him. I think it depends on the severity of their swallowing difficulties as to how well they do. This is my son's worst problem in comparison the the CHARGE problems, so it didn't really surprise me. Now he can tell me if the food makes it to his stomach, or if he aspirates. I think the communication has alot to do with being able to work with the child. At 3, my son couldn't understand what it would do for him, but now he does. I have also learned to respect my son's wishes when it comes to eating because he knows the days that are good to do it, and when he is just not up to it. He can also tell me when it frightens him, so I have to respect that. I believe with my son, that he will get the hang of it on his terms, not mine. I've done everything I can do, I can't do anymore when it comes to making him eat. .... One piece of great advice I got was that: you wouldn't want someone to hold you down and shove food in your mouth if you didn't want it. Debbie Matasker mom to 5 w/CHARGE, 7, andra 3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2002 Report Share Posted August 20, 2002 Thought I'd add my 2 cents. The estim didn't help my son , now age 5. It would work for about three weeks, then the swallow would regress. I think he might have been too young considering the severity of his swallowing problem. Now he might do better, but he is still aspirating and I am not sure if going back will help him. I think it depends on the severity of their swallowing difficulties as to how well they do. This is my son's worst problem in comparison the the CHARGE problems, so it didn't really surprise me. Now he can tell me if the food makes it to his stomach, or if he aspirates. I think the communication has alot to do with being able to work with the child. At 3, my son couldn't understand what it would do for him, but now he does. I have also learned to respect my son's wishes when it comes to eating because he knows the days that are good to do it, and when he is just not up to it. He can also tell me when it frightens him, so I have to respect that. I believe with my son, that he will get the hang of it on his terms, not mine. I've done everything I can do, I can't do anymore when it comes to making him eat. .... One piece of great advice I got was that: you wouldn't want someone to hold you down and shove food in your mouth if you didn't want it. Debbie Matasker mom to 5 w/CHARGE, 7, andra 3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2002 Report Share Posted August 20, 2002 Debbie, I was glad to see your post, but sorry that the e-stim didn't help in the long-run. How is he doing otherwise? Incidentally, I don't believe in forcing food on someone either. I never forced my daugher. She was actually, for the most part, eager to please and loved having food in her mouth. Even so, it wasn't exactly easy. You can't just flip a switch and say ok, now you can swallow, so eat. There are so many skills that must be taught and acquired before that can happen. I did have so called experts telling me what I should do and some of it felt downright abusive, so I didn't do it. It was easy for them to make their recommendations from a distance or a one-time clinical assessment. They wouldn't be dealing with the problems that can be caused by forcing an issue and making feeding anything less than a positive experience. Each child's limits need to be respected, but sometimes you do have to nudge them a little. We used sticker charts, praise, etc.... always postive re-inforcements. The best advice I got from a feeding expert was from Polly Tarbell at Kluge. I know that her name has been posted a few times so you know about her. I have never met her in person, but she (over the phone) really helped me alot with the transition from tube to oral feeding. I had initially called her to book time to come for therapy and she thought we were doing great on our own and coached me. In addition to her degree in Speech Pathology, she has a master's in education and really understands child development. This is so key to working with children. By the way, the experts, except for Polly, told me not to use a syringe to feed my daughter. They said anyone could eat from a syringe. Well...I think they really weren't totally considering who they were talking about...someone who had been tube fed her entire life, so I ignored them and did it anyway. I figured at least she was using her swallow that way. It was one step better than a tube feeding, and she kind of sucked on it like a bottle. Anyway, Polly told me to do it to get the hunger/satiation cycle solidly established. She totally agreed with me. I felt so vindicated! So, the bottom line is we all have to do what we think is best for our child/children. And, no-one knows our child/children better than us--no matter how " expert " they are! Knowing you, I am sure that you are doing the best for . I hope to hear from you soon... You can e-mail me privately if you wish.... aparham@... -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2002 Report Share Posted August 20, 2002 Debbie, I was glad to see your post, but sorry that the e-stim didn't help in the long-run. How is he doing otherwise? Incidentally, I don't believe in forcing food on someone either. I never forced my daugher. She was actually, for the most part, eager to please and loved having food in her mouth. Even so, it wasn't exactly easy. You can't just flip a switch and say ok, now you can swallow, so eat. There are so many skills that must be taught and acquired before that can happen. I did have so called experts telling me what I should do and some of it felt downright abusive, so I didn't do it. It was easy for them to make their recommendations from a distance or a one-time clinical assessment. They wouldn't be dealing with the problems that can be caused by forcing an issue and making feeding anything less than a positive experience. Each child's limits need to be respected, but sometimes you do have to nudge them a little. We used sticker charts, praise, etc.... always postive re-inforcements. The best advice I got from a feeding expert was from Polly Tarbell at Kluge. I know that her name has been posted a few times so you know about her. I have never met her in person, but she (over the phone) really helped me alot with the transition from tube to oral feeding. I had initially called her to book time to come for therapy and she thought we were doing great on our own and coached me. In addition to her degree in Speech Pathology, she has a master's in education and really understands child development. This is so key to working with children. By the way, the experts, except for Polly, told me not to use a syringe to feed my daughter. They said anyone could eat from a syringe. Well...I think they really weren't totally considering who they were talking about...someone who had been tube fed her entire life, so I ignored them and did it anyway. I figured at least she was using her swallow that way. It was one step better than a tube feeding, and she kind of sucked on it like a bottle. Anyway, Polly told me to do it to get the hunger/satiation cycle solidly established. She totally agreed with me. I felt so vindicated! So, the bottom line is we all have to do what we think is best for our child/children. And, no-one knows our child/children better than us--no matter how " expert " they are! Knowing you, I am sure that you are doing the best for . I hope to hear from you soon... You can e-mail me privately if you wish.... aparham@... -- Quote Link to comment Share on other sites More sharing options...
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