Guest guest Posted February 15, 2002 Report Share Posted February 15, 2002 Hi Eve. I'll do my best to respond to your question about the " fundo " . The full name for this procedure is fundoplycation. It is done by taking the opening between the stomach and esophogus and wrapping it tight with the stomach tissue (sort of like pulling up panythose and then wrapping it tight at the top) which makes it much harder and sometimes impossible to throw up depending on how tight the " wrap " is. A partial wrap is called a fundo and a full wrap is called a nissen (atleast that is what my husband and I have been told by our daughter's doctors). Our daughter, Aubrey, now 3 years old, has had two " fundo " operations and she has a g-tube. Her first fundo was done at almost 3 months due to severe reflux, every feeding was followed by a barfing and aspirating session. Anyway, her first fundo came undone and had to be repaired (the fundo doesn't stop them from wretching and Aubrey wretched so hard that her stomach ripped up through her diaphram--it was a real party that first year. I have heard of this happening to other kids too, needing the fundo done more than once. She has since then grown out of it but not until recently. I have also been told that the fundo itself can cause problems sometimes with oral feedings. The food goes down the esophogus but then bounces back up off the fundo. One doc even told me that the stomach never works quite normally after a fundo. I guess all operations have their pros and cons but it was necessary for Aubrey. I don't know what else we would have done. Hope this helps. , mom to Ian, age 9 and Aubrey, age 3, charge, wife to Bradley --- Cammy Eve wrote: > Hello everyone; > I'll be taking Tyler to the Paed Dr next week and I > have lots of questions > for him! Unfortunately, I don't understand some my > own questions! LOL > > Tyler is still the pukiest kid I've ever met in my > life. Only it seems to be > getting worse. Instead of once a day, he's throwing > up at every feed. > Including the over night one. We've tried 2 > different reflux meds without > success. I'd like to know more about 'fondo'? What's > the whole word? What is > the procedure all about? Is it a difficult > operation? Which specialist would > I see about all this barfing? > > Ear wax is another big issue for Tyler. Because his > ear canals are so > narrow, it doesn't take much to plug them up. Tyler > is still not making much > progress in the learning to listen department. Would > tubes in his ears help > at all? Will a Dr even do tubes if there's no > history of ear infections? > > Extra large tonsils? Do you think this is why Tyler > has such difficulty > swallowing? Maybe also why he sounds like he has > chronic pneumonia? > > Tyler's spine is a 'C' shape. Very noticeable when > he's practicing his > sitting, the shoulder hump is there too. Though his > spine is still flexible > and is able to straighten out. Is that scollious > (sp)? What's the treatment > for it? Back brace when sleeping? I can't see Tyler > tolerating a brace > during the day. > > Tyler is very 'layed back'! He won't try to get a > toy that's out of his > reach. Takes him 2 weeks to get used to anything new > that's introduced to > him. The only thing he seems interested in, is the > new baby! She's 2 weeks > old and another foster child for us. I've nick named > her 'bait'! LOL Tyler > will try very hard to go get her. Any ideas how I > can encourage Tyler to > become a little more curious to the things around > him? > > Upper body strength is another big problem. Tyler's > a lot better with head > control, but he's still very weak. Thoughts? > Sometimes I think he's > frustrated by his lack of mobility. But in the next > breath, he doesn't seem > to be 'trying' very hard either! > > Any thoughts from you guys would greatly help me > explaining these things to > the Paed. > Thanks and have a great day, Eve (foster mom to > Tyler, 19 months, cHARGe) > > > > _________________________________________________________________ > Chat with friends online, try MSN Messenger: > http://messenger.msn.com > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2002 Report Share Posted February 15, 2002 Hi Eve. I'll do my best to respond to your question about the " fundo " . The full name for this procedure is fundoplycation. It is done by taking the opening between the stomach and esophogus and wrapping it tight with the stomach tissue (sort of like pulling up panythose and then wrapping it tight at the top) which makes it much harder and sometimes impossible to throw up depending on how tight the " wrap " is. A partial wrap is called a fundo and a full wrap is called a nissen (atleast that is what my husband and I have been told by our daughter's doctors). Our daughter, Aubrey, now 3 years old, has had two " fundo " operations and she has a g-tube. Her first fundo was done at almost 3 months due to severe reflux, every feeding was followed by a barfing and aspirating session. Anyway, her first fundo came undone and had to be repaired (the fundo doesn't stop them from wretching and Aubrey wretched so hard that her stomach ripped up through her diaphram--it was a real party that first year. I have heard of this happening to other kids too, needing the fundo done more than once. She has since then grown out of it but not until recently. I have also been told that the fundo itself can cause problems sometimes with oral feedings. The food goes down the esophogus but then bounces back up off the fundo. One doc even told me that the stomach never works quite normally after a fundo. I guess all operations have their pros and cons but it was necessary for Aubrey. I don't know what else we would have done. Hope this helps. , mom to Ian, age 9 and Aubrey, age 3, charge, wife to Bradley --- Cammy Eve wrote: > Hello everyone; > I'll be taking Tyler to the Paed Dr next week and I > have lots of questions > for him! Unfortunately, I don't understand some my > own questions! LOL > > Tyler is still the pukiest kid I've ever met in my > life. Only it seems to be > getting worse. Instead of once a day, he's throwing > up at every feed. > Including the over night one. We've tried 2 > different reflux meds without > success. I'd like to know more about 'fondo'? What's > the whole word? What is > the procedure all about? Is it a difficult > operation? Which specialist would > I see about all this barfing? > > Ear wax is another big issue for Tyler. Because his > ear canals are so > narrow, it doesn't take much to plug them up. Tyler > is still not making much > progress in the learning to listen department. Would > tubes in his ears help > at all? Will a Dr even do tubes if there's no > history of ear infections? > > Extra large tonsils? Do you think this is why Tyler > has such difficulty > swallowing? Maybe also why he sounds like he has > chronic pneumonia? > > Tyler's spine is a 'C' shape. Very noticeable when > he's practicing his > sitting, the shoulder hump is there too. Though his > spine is still flexible > and is able to straighten out. Is that scollious > (sp)? What's the treatment > for it? Back brace when sleeping? I can't see Tyler > tolerating a brace > during the day. > > Tyler is very 'layed back'! He won't try to get a > toy that's out of his > reach. Takes him 2 weeks to get used to anything new > that's introduced to > him. The only thing he seems interested in, is the > new baby! She's 2 weeks > old and another foster child for us. I've nick named > her 'bait'! LOL Tyler > will try very hard to go get her. Any ideas how I > can encourage Tyler to > become a little more curious to the things around > him? > > Upper body strength is another big problem. Tyler's > a lot better with head > control, but he's still very weak. Thoughts? > Sometimes I think he's > frustrated by his lack of mobility. But in the next > breath, he doesn't seem > to be 'trying' very hard either! > > Any thoughts from you guys would greatly help me > explaining these things to > the Paed. > Thanks and have a great day, Eve (foster mom to > Tyler, 19 months, cHARGe) > > > > _________________________________________________________________ > Chat with friends online, try MSN Messenger: > http://messenger.msn.com > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2002 Report Share Posted February 15, 2002 HI, I'm gonna give you some ideas, although, keep in mind that my son does not have charge... > Hello everyone; > I'll be taking Tyler to the Paed Dr next week and I have lots of questions > for him! Unfortunately, I don't understand some my own questions! LOL > > Ear wax is another big issue for Tyler. Because his ear canals are so > narrow, it doesn't take much to plug them up. Tyler is still not making much > progress in the learning to listen department. Would tubes in his ears help > at all? Will a Dr even do tubes if there's no history of ear infections? I actually don't know the answer to this, but will be interested in other people's replies. My son's canals are also very narrow and collect ear wax. Tubes have never been suggested. The ENT has never been much help...the 2 we've seen can't get past the fact that the canals are so tiny...too tiny for thier wire loops they use to clean ears. The ped. prescribed ear wax removal ointment, but the drops would never get down inside the canal, always ran out....I've never felt the wax intereferred w/my son's hearing...and he has good audiograms. > > Extra large tonsils? Do you think this is why Tyler has such difficulty > swallowing? Maybe also why he sounds like he has chronic pneumonia? > Large tonsils and adenoids can do this...by sounds of chronic pneumonia, do you mean chest sounds or do you mean rattled breathing through the throat? > Tyler's spine is a 'C' shape. Very noticeable when he's practicing his > sitting, the shoulder hump is there too. Though his spine is still flexible > and is able to straighten out. Is that scollious (sp)? Course, it's hard to know without seeing the guy, but from what you say here, it doesn't sound like scoliosis to me....sounds like hypotonia and poor extionsion muschles in the trunk/back. I would think his physical therapist could distinguish this. > > Tyler is very 'layed back'! He won't try to get a toy that's out of his > reach. Takes him 2 weeks to get used to anything new that's introduced to > him. Any ideas how I can encourage Tyler to > become a little more curious to the things around him? To me, this sounds like he may have difficulty with motor planning (dyspraxia). He might benefit from co-active (hand-over_hand) assistance in performing a task (reaching, transitioning out of sitting into crawl, ect) or from verbal and tactile prompting to help him activate the appropriate actions for the movements. Dyspraxia and adjusting to changes in his world are common for kids with sensory integrative dysfunction. Have his therapists mentioned this with you? > > Upper body strength is another big problem. Tyler's a lot better with head > control, but he's still very weak. Thoughts? Sometimes I think he's > frustrated by his lack of mobility. But in the next breath, he doesn't seem > to be 'trying' very hard either! This again, sounds like dyspraxia, low muscle tone, as well as there are always possible emotional/behavioral components (discouragement; manipulation/expectation for others to do things for him; general fatigue). So, hope that helped some.....what do the rest of you guys think? embryopathy mom to 18 yr old w/global hypotonia & dyspraxia, significant/severe sensory integrative dysfunction, nonverbal, mental retardation, sleep disorder, chronic sinusitus, significant bilateral exostropia, chronic severe constipation.......:Accutane Embryopathy > Any thoughts from you guys would greatly help me explaining these things to > the Paed. > Thanks and have a great day, Eve (foster mom to Tyler, 19 months, cHARGe) > > > > _________________________________________________________________ > Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2002 Report Share Posted February 15, 2002 HI, I'm gonna give you some ideas, although, keep in mind that my son does not have charge... > Hello everyone; > I'll be taking Tyler to the Paed Dr next week and I have lots of questions > for him! Unfortunately, I don't understand some my own questions! LOL > > Ear wax is another big issue for Tyler. Because his ear canals are so > narrow, it doesn't take much to plug them up. Tyler is still not making much > progress in the learning to listen department. Would tubes in his ears help > at all? Will a Dr even do tubes if there's no history of ear infections? I actually don't know the answer to this, but will be interested in other people's replies. My son's canals are also very narrow and collect ear wax. Tubes have never been suggested. The ENT has never been much help...the 2 we've seen can't get past the fact that the canals are so tiny...too tiny for thier wire loops they use to clean ears. The ped. prescribed ear wax removal ointment, but the drops would never get down inside the canal, always ran out....I've never felt the wax intereferred w/my son's hearing...and he has good audiograms. > > Extra large tonsils? Do you think this is why Tyler has such difficulty > swallowing? Maybe also why he sounds like he has chronic pneumonia? > Large tonsils and adenoids can do this...by sounds of chronic pneumonia, do you mean chest sounds or do you mean rattled breathing through the throat? > Tyler's spine is a 'C' shape. Very noticeable when he's practicing his > sitting, the shoulder hump is there too. Though his spine is still flexible > and is able to straighten out. Is that scollious (sp)? Course, it's hard to know without seeing the guy, but from what you say here, it doesn't sound like scoliosis to me....sounds like hypotonia and poor extionsion muschles in the trunk/back. I would think his physical therapist could distinguish this. > > Tyler is very 'layed back'! He won't try to get a toy that's out of his > reach. Takes him 2 weeks to get used to anything new that's introduced to > him. Any ideas how I can encourage Tyler to > become a little more curious to the things around him? To me, this sounds like he may have difficulty with motor planning (dyspraxia). He might benefit from co-active (hand-over_hand) assistance in performing a task (reaching, transitioning out of sitting into crawl, ect) or from verbal and tactile prompting to help him activate the appropriate actions for the movements. Dyspraxia and adjusting to changes in his world are common for kids with sensory integrative dysfunction. Have his therapists mentioned this with you? > > Upper body strength is another big problem. Tyler's a lot better with head > control, but he's still very weak. Thoughts? Sometimes I think he's > frustrated by his lack of mobility. But in the next breath, he doesn't seem > to be 'trying' very hard either! This again, sounds like dyspraxia, low muscle tone, as well as there are always possible emotional/behavioral components (discouragement; manipulation/expectation for others to do things for him; general fatigue). So, hope that helped some.....what do the rest of you guys think? embryopathy mom to 18 yr old w/global hypotonia & dyspraxia, significant/severe sensory integrative dysfunction, nonverbal, mental retardation, sleep disorder, chronic sinusitus, significant bilateral exostropia, chronic severe constipation.......:Accutane Embryopathy > Any thoughts from you guys would greatly help me explaining these things to > the Paed. > Thanks and have a great day, Eve (foster mom to Tyler, 19 months, cHARGe) > > > > _________________________________________________________________ > Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2002 Report Share Posted February 15, 2002 Hi again. I forgot to tell you what kind of specialist handles the fundo operation. In some cases it's the G.I. (gastro-interologist) doc and in our case a " general surgeon " at the local children's hospital did our daughters'. But a G.I. doc would probably be a good place to start. , mom to Ian, 9, Aubrey 3 charge, wife to Bradley --- Cammy Eve wrote: > Hello everyone; > I'll be taking Tyler to the Paed Dr next week and I > have lots of questions > for him! Unfortunately, I don't understand some my > own questions! LOL > > Tyler is still the pukiest kid I've ever met in my > life. Only it seems to be > getting worse. Instead of once a day, he's throwing > up at every feed. > Including the over night one. We've tried 2 > different reflux meds without > success. I'd like to know more about 'fondo'? What's > the whole word? What is > the procedure all about? Is it a difficult > operation? Which specialist would > I see about all this barfing? > > Ear wax is another big issue for Tyler. Because his > ear canals are so > narrow, it doesn't take much to plug them up. Tyler > is still not making much > progress in the learning to listen department. Would > tubes in his ears help > at all? Will a Dr even do tubes if there's no > history of ear infections? > > Extra large tonsils? Do you think this is why Tyler > has such difficulty > swallowing? Maybe also why he sounds like he has > chronic pneumonia? > > Tyler's spine is a 'C' shape. Very noticeable when > he's practicing his > sitting, the shoulder hump is there too. Though his > spine is still flexible > and is able to straighten out. Is that scollious > (sp)? What's the treatment > for it? Back brace when sleeping? I can't see Tyler > tolerating a brace > during the day. > > Tyler is very 'layed back'! He won't try to get a > toy that's out of his > reach. Takes him 2 weeks to get used to anything new > that's introduced to > him. The only thing he seems interested in, is the > new baby! She's 2 weeks > old and another foster child for us. I've nick named > her 'bait'! LOL Tyler > will try very hard to go get her. Any ideas how I > can encourage Tyler to > become a little more curious to the things around > him? > > Upper body strength is another big problem. Tyler's > a lot better with head > control, but he's still very weak. Thoughts? > Sometimes I think he's > frustrated by his lack of mobility. But in the next > breath, he doesn't seem > to be 'trying' very hard either! > > Any thoughts from you guys would greatly help me > explaining these things to > the Paed. > Thanks and have a great day, Eve (foster mom to > Tyler, 19 months, cHARGe) > > > > _________________________________________________________________ > Chat with friends online, try MSN Messenger: > http://messenger.msn.com > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2002 Report Share Posted February 15, 2002 Hi again. I forgot to tell you what kind of specialist handles the fundo operation. In some cases it's the G.I. (gastro-interologist) doc and in our case a " general surgeon " at the local children's hospital did our daughters'. But a G.I. doc would probably be a good place to start. , mom to Ian, 9, Aubrey 3 charge, wife to Bradley --- Cammy Eve wrote: > Hello everyone; > I'll be taking Tyler to the Paed Dr next week and I > have lots of questions > for him! Unfortunately, I don't understand some my > own questions! LOL > > Tyler is still the pukiest kid I've ever met in my > life. Only it seems to be > getting worse. Instead of once a day, he's throwing > up at every feed. > Including the over night one. We've tried 2 > different reflux meds without > success. I'd like to know more about 'fondo'? What's > the whole word? What is > the procedure all about? Is it a difficult > operation? Which specialist would > I see about all this barfing? > > Ear wax is another big issue for Tyler. Because his > ear canals are so > narrow, it doesn't take much to plug them up. Tyler > is still not making much > progress in the learning to listen department. Would > tubes in his ears help > at all? Will a Dr even do tubes if there's no > history of ear infections? > > Extra large tonsils? Do you think this is why Tyler > has such difficulty > swallowing? Maybe also why he sounds like he has > chronic pneumonia? > > Tyler's spine is a 'C' shape. Very noticeable when > he's practicing his > sitting, the shoulder hump is there too. Though his > spine is still flexible > and is able to straighten out. Is that scollious > (sp)? What's the treatment > for it? Back brace when sleeping? I can't see Tyler > tolerating a brace > during the day. > > Tyler is very 'layed back'! He won't try to get a > toy that's out of his > reach. Takes him 2 weeks to get used to anything new > that's introduced to > him. The only thing he seems interested in, is the > new baby! She's 2 weeks > old and another foster child for us. I've nick named > her 'bait'! LOL Tyler > will try very hard to go get her. Any ideas how I > can encourage Tyler to > become a little more curious to the things around > him? > > Upper body strength is another big problem. Tyler's > a lot better with head > control, but he's still very weak. Thoughts? > Sometimes I think he's > frustrated by his lack of mobility. But in the next > breath, he doesn't seem > to be 'trying' very hard either! > > Any thoughts from you guys would greatly help me > explaining these things to > the Paed. > Thanks and have a great day, Eve (foster mom to > Tyler, 19 months, cHARGe) > > > > _________________________________________________________________ > Chat with friends online, try MSN Messenger: > http://messenger.msn.com > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2002 Report Share Posted February 15, 2002 What were Aubrie's symtoms that led the docs to do the fundo again? My son had the Nissen type at a young age and now at 11 they are looking into the need to redo it. His bronch showed no aspiration in the lungs but did show an inflamed area in the esophagus which may suggest some reflux. I dont want to have him go through another surgery. He will go for an upper GI in March to check the wrap area. Krencicki re: BRadley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2002 Report Share Posted February 15, 2002 What were Aubrie's symtoms that led the docs to do the fundo again? My son had the Nissen type at a young age and now at 11 they are looking into the need to redo it. His bronch showed no aspiration in the lungs but did show an inflamed area in the esophagus which may suggest some reflux. I dont want to have him go through another surgery. He will go for an upper GI in March to check the wrap area. Krencicki re: BRadley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2002 Report Share Posted February 15, 2002 , We knew something was really wrong because in addition to alot of wretching, I was suctioning formula or food out of Aubrey's trach and it would sometimes come out of her mouth (and she was totally tube fed). We were also having to go for chest ex-rays all the time and had constant airway infections, so the doctor that put in the first fundo did an upper G.I. and it showed that she not only was refluxing, but that her stomach was up higher than before and had ripped through her diaphram, so we did the fundo again. He did a fundo or partial wrap both times because he said that way if she had a flu bug or something, she would be able to throw that up, but should be able to keep her food down when she wasn't sick. In addition to the fundos we've always had her on Zantac or Prilosec (Zantac worked just as well for Aubrey and our insurance didn't cover Prilosec). After you take your son for the upper G.I. the doctors should know whether or not they need to redo the nissen. Another test we've had done was a Ph probe. You may already be familiar with it, but it tells if there are stomach acids in the esophugus, they put a probe in the nose down to the stomach and leave it there for 24 hours and it measures the acid coming up into the esophogus. Also, have you ever had him on Nexium or asked the doctor about it? It's by makers of Prilosec. The commercials say it's supposed to help the reflux and repair the erosion in the esophogus. I know one adult who said it has saved her. But I don't know how old you have to be to take it. Maybe you won't have to put your son through another surgery. Good luck. , mom to Ian, 9, Aubrey 3 (charge), and wife to Bradley --- TKRENCICK1@... wrote: > What were Aubrie's symtoms that led the docs to do > the fundo again? My son > had the Nissen type at a young age and now at 11 > they are looking into the > need to redo it. His bronch showed no aspiration in > the lungs but did show > an inflamed area in the esophagus which may suggest > some reflux. I dont want > to have him go through another surgery. He will go > for an upper GI in March > to check the wrap area. Krencicki re: BRadley > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 Thanks for all the replies! We see the Paed Dr in the morning and thanks to your guys, I at least have some sort of clue what I'm talking about! All the best, Eve (foster mom to Tyler, 19 months, cHARGe) _________________________________________________________________ Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 Thanks for all the replies! We see the Paed Dr in the morning and thanks to your guys, I at least have some sort of clue what I'm talking about! All the best, Eve (foster mom to Tyler, 19 months, cHARGe) _________________________________________________________________ Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 In a message dated 2/18/02 6:46:18 AM Central Standard Time, kbushnell9@... writes: > What about repeat > gastrostomies? > Hi there, My son Mark had several gastrostomies. He also had a jejunostomy at one point along with a gastrostomy. His was moved a few times due to surgeries. His digestive problems were TEF tracheo-esophageal fistula, duodenal stenosis, Nissen fundal plycation. His feeding abilities were very poor and as of now he just takes soft diet and ground solids at 18. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 In a message dated 2/18/02 6:46:18 AM Central Standard Time, kbushnell9@... writes: > What about repeat > gastrostomies? > Hi there, My son Mark had several gastrostomies. He also had a jejunostomy at one point along with a gastrostomy. His was moved a few times due to surgeries. His digestive problems were TEF tracheo-esophageal fistula, duodenal stenosis, Nissen fundal plycation. His feeding abilities were very poor and as of now he just takes soft diet and ground solids at 18. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 Hi all, I just recently joined the group and I think I am coming in on this midway through the thread. I was curious if repeat fundoplications are typical for kids with CHARGE? What about repeat gastrostomies? GI-wise, Rebekah (my 4 year old with CHARGE) has had 2 Nissens, 4 gastrostomies, and finally a jejunostomy when the doctor could not get through the scar tissue to redo the last Nissen. Presently she has a dual intake manifold (G-Button and J-tube), but the surgeon thinks she may have prolasped her stomach again. We recently relocated to Houston from Dallas. Of course, we have to see all new doctors and they are driving me crazy with wanting to do everything different. The GI wants to try a different type of Fundo (anyone heard of a Tahl?)and get her to use her stomach again. The surgeon want to do a Rue-N-Y (sounds like " ruin-why? to me!). which is a different kind of jejunostomy than what she has, so she can get rid of the g-button. The ENT wants to decanullate (sp?) her, but the doc is Dallas was quite happy with the situation (breathing is a good thing -right?) I am scared to go see any of the other 12 specialist. I thought we had just got her stable and here everyone wants to overhaul her. Paz, --- TKRENCICK1@... wrote: > What were Aubrie's symtoms that led the docs to > do the fundo again? My son > had the Nissen type at a young age and now at > 11 they are looking into the > need to redo it. His bronch showed no > aspiration in the lungs but did show > an inflamed area in the esophagus which may > suggest some reflux. I dont want > to have him go through another surgery. He > will go for an upper GI in March > to check the wrap area. Krencicki re: > BRadley > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 Hi all, I just recently joined the group and I think I am coming in on this midway through the thread. I was curious if repeat fundoplications are typical for kids with CHARGE? What about repeat gastrostomies? GI-wise, Rebekah (my 4 year old with CHARGE) has had 2 Nissens, 4 gastrostomies, and finally a jejunostomy when the doctor could not get through the scar tissue to redo the last Nissen. Presently she has a dual intake manifold (G-Button and J-tube), but the surgeon thinks she may have prolasped her stomach again. We recently relocated to Houston from Dallas. Of course, we have to see all new doctors and they are driving me crazy with wanting to do everything different. The GI wants to try a different type of Fundo (anyone heard of a Tahl?)and get her to use her stomach again. The surgeon want to do a Rue-N-Y (sounds like " ruin-why? to me!). which is a different kind of jejunostomy than what she has, so she can get rid of the g-button. The ENT wants to decanullate (sp?) her, but the doc is Dallas was quite happy with the situation (breathing is a good thing -right?) I am scared to go see any of the other 12 specialist. I thought we had just got her stable and here everyone wants to overhaul her. Paz, --- TKRENCICK1@... wrote: > What were Aubrie's symtoms that led the docs to > do the fundo again? My son > had the Nissen type at a young age and now at > 11 they are looking into the > need to redo it. His bronch showed no > aspiration in the lungs but did show > an inflamed area in the esophagus which may > suggest some reflux. I dont want > to have him go through another surgery. He > will go for an upper GI in March > to check the wrap area. Krencicki re: > BRadley > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 , From what I have been able to ascertain from the list, there are a number of the kids with fundos. My daughter has a Nissen fundoplication (full wrap), but I am sure there are others with a Thal wrap (this is a partial wrapping). I am not sure on repeat gastrostomies...you mean if they come off the tube, their stoma heals then they get the gastrostomy done again? Why do they want to get off the g button? Is she still refluxing a lot? I'd go with a Nissen instead of a j tube, but that's just my opinion.... Weir Mom to Kennedy 4yr old CHARGEr, 12, 10, and wife to Graeme New Brunswick, Canada Visit the " Weir homepage " at: http://personal.nbnet.nb.ca/gweir ICQ #1426476 " In three words I can sum up everything I've learned about life: it goes on. " - Frost Re: Questions for the doctor Hi all, I just recently joined the group and I think I am coming in on this midway through the thread. I was curious if repeat fundoplications are typical for kids with CHARGE? What about repeat gastrostomies? GI-wise, Rebekah (my 4 year old with CHARGE) has had 2 Nissens, 4 gastrostomies, and finally a jejunostomy when the doctor could not get through the scar tissue to redo the last Nissen. Presently she has a dual intake manifold (G-Button and J-tube), but the surgeon thinks she may have prolasped her stomach again. We recently relocated to Houston from Dallas. Of course, we have to see all new doctors and they are driving me crazy with wanting to do everything different. The GI wants to try a different type of Fundo (anyone heard of a Tahl?)and get her to use her stomach again. The surgeon want to do a Rue-N-Y (sounds like " ruin-why? to me!). which is a different kind of jejunostomy than what she has, so she can get rid of the g-button. The ENT wants to decanullate (sp?) her, but the doc is Dallas was quite happy with the situation (breathing is a good thing -right?) I am scared to go see any of the other 12 specialist. I thought we had just got her stable and here everyone wants to overhaul her. Paz, --- TKRENCICK1@... wrote: > What were Aubrie's symtoms that led the docs to > do the fundo again? My son > had the Nissen type at a young age and now at > 11 they are looking into the > need to redo it. His bronch showed no > aspiration in the lungs but did show > an inflamed area in the esophagus which may > suggest some reflux. I dont want > to have him go through another surgery. He > will go for an upper GI in March > to check the wrap area. Krencicki re: > BRadley > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 , From what I have been able to ascertain from the list, there are a number of the kids with fundos. My daughter has a Nissen fundoplication (full wrap), but I am sure there are others with a Thal wrap (this is a partial wrapping). I am not sure on repeat gastrostomies...you mean if they come off the tube, their stoma heals then they get the gastrostomy done again? Why do they want to get off the g button? Is she still refluxing a lot? I'd go with a Nissen instead of a j tube, but that's just my opinion.... Weir Mom to Kennedy 4yr old CHARGEr, 12, 10, and wife to Graeme New Brunswick, Canada Visit the " Weir homepage " at: http://personal.nbnet.nb.ca/gweir ICQ #1426476 " In three words I can sum up everything I've learned about life: it goes on. " - Frost Re: Questions for the doctor Hi all, I just recently joined the group and I think I am coming in on this midway through the thread. I was curious if repeat fundoplications are typical for kids with CHARGE? What about repeat gastrostomies? GI-wise, Rebekah (my 4 year old with CHARGE) has had 2 Nissens, 4 gastrostomies, and finally a jejunostomy when the doctor could not get through the scar tissue to redo the last Nissen. Presently she has a dual intake manifold (G-Button and J-tube), but the surgeon thinks she may have prolasped her stomach again. We recently relocated to Houston from Dallas. Of course, we have to see all new doctors and they are driving me crazy with wanting to do everything different. The GI wants to try a different type of Fundo (anyone heard of a Tahl?)and get her to use her stomach again. The surgeon want to do a Rue-N-Y (sounds like " ruin-why? to me!). which is a different kind of jejunostomy than what she has, so she can get rid of the g-button. The ENT wants to decanullate (sp?) her, but the doc is Dallas was quite happy with the situation (breathing is a good thing -right?) I am scared to go see any of the other 12 specialist. I thought we had just got her stable and here everyone wants to overhaul her. Paz, --- TKRENCICK1@... wrote: > What were Aubrie's symtoms that led the docs to > do the fundo again? My son > had the Nissen type at a young age and now at > 11 they are looking into the > need to redo it. His bronch showed no > aspiration in the lungs but did show > an inflamed area in the esophagus which may > suggest some reflux. I dont want > to have him go through another surgery. He > will go for an upper GI in March > to check the wrap area. Krencicki re: > BRadley > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2002 Report Share Posted February 19, 2002 , I was wondering if keeping the fundos intact are a common problem. And if the gastrostomies tend to prolapse. Rebekah's new surgeon has experience with another kid with CHARGE and says he has had the same problem. Little bit of Rebekah's med history... She got a gastrostomy and Nissen at a week old. while still in NICU, she pulled out the G-tube, the surgeon couldn't re-insert so gastrostomy #2. Around 10 months, she had pulled the button out so many times, the lining of her stomach was pulled out to the surface. Gastrostomy #3. She starts throwing up for the next 5 days after surgery. Come to find out the balloon blocking the opening to the intestines. Insert a G-J tube, but with all the wretching, the Nissen is out. G-J tube is a pain (it comes out all the time.) Gastrostomy #4 to move the stoma out from in front of the intestines and another Nissen. (Side note: Rebekah's airway shuts down the day after surgery & Pedi ICU team does emergency intubation) Rebekah starts throwing up with feedings. Nissen slipped - again. Surgeon goes in to redo Nissen and perform tracheostomy. Mom get call from OR - Surgeon can't get to stomach - too much scar tissue - will perform jejunostomy. Back to present... Rebekah gets fed through her J-tube. The G-button is just there for looks. Actually, her surgeon in Dallas wanted to keep the button in place until he could redo the Nissen " when she gets bigger " and her wouldn't have to put her through another gastrostomy. Here in Houston, her surgeon said " these kids " (yuk) don't do well with Nissens and he wants to do a different jejunostomy (the one she has right now is held on be tape so one good tug from her 2 year old brother sends us to the ER). The GI says that she should use her stomach - I guess with hopes that she will eventually eat orally. I guess I was wondering if kids with CHARGE tend to be prone to Nissens slipping and prolapsing their stomachs. Thanks for the help. Paz, --- Graeme & Weir wrote: > , > From what I have been able to ascertain from > the list, there are a number of the kids with > fundos. My daughter has a Nissen > fundoplication (full wrap), but I am sure there > are others with a Thal wrap (this is a partial > wrapping). I am not sure on repeat > gastrostomies...you mean if they come off the > tube, their stoma heals then they get the > gastrostomy done again? > Why do they want to get off the g button? > Is she still refluxing a lot? I'd go with a > Nissen instead of a j tube, but that's just my > opinion.... > Weir > Mom to Kennedy 4yr old CHARGEr, 12, > 10, and wife to Graeme > New Brunswick, Canada > Visit the " Weir homepage " at: > http://personal.nbnet.nb.ca/gweir > ICQ #1426476 > > " In three words I can sum up everything I've > learned about life: it goes on. " > - Frost > > > > > Re: Questions for the > doctor > > > Hi all, > > I just recently joined the group and I think > I am > coming in on this midway through the thread. > > I was curious if repeat fundoplications are > typical for kids with CHARGE? What about > repeat > gastrostomies? > > GI-wise, Rebekah (my 4 year old with CHARGE) > has > had 2 Nissens, 4 gastrostomies, and finally a > jejunostomy when the doctor could not get > through > the scar tissue to redo the last Nissen. > Presently she has a dual intake manifold > (G-Button and J-tube), but the surgeon thinks > she > may have prolasped her stomach again. > > We recently relocated to Houston from Dallas. > Of > course, we have to see all new doctors and > they > are driving me crazy with wanting to do > everything different. > > The GI wants to try a different type of Fundo > (anyone heard of a Tahl?)and get her to use > her > stomach again. The surgeon want to do a > Rue-N-Y > (sounds like " ruin-why? to me!). which is a > different kind of jejunostomy than what she > has, > so she can get rid of the g-button. > > The ENT wants to decanullate (sp?) her, but > the > doc is Dallas was quite happy with the > situation > (breathing is a good thing -right?) I am > scared > to go see any of the other 12 specialist. I > thought we had just got her stable and here > everyone wants to overhaul her. > > Paz, > > > > > > > > --- TKRENCICK1@... wrote: > > What were Aubrie's symtoms that led the > docs to > > do the fundo again? My son > > had the Nissen type at a young age and now > at > > 11 they are looking into the > > need to redo it. His bronch showed no > > aspiration in the lungs but did show > > an inflamed area in the esophagus which may > > suggest some reflux. I dont want > > to have him go through another surgery. He > > will go for an upper GI in March > > to check the wrap area. Krencicki re: > > BRadley > > > > > > [Non-text portions of this message have > been > > removed] > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2002 Report Share Posted February 19, 2002 , I was wondering if keeping the fundos intact are a common problem. And if the gastrostomies tend to prolapse. Rebekah's new surgeon has experience with another kid with CHARGE and says he has had the same problem. Little bit of Rebekah's med history... She got a gastrostomy and Nissen at a week old. while still in NICU, she pulled out the G-tube, the surgeon couldn't re-insert so gastrostomy #2. Around 10 months, she had pulled the button out so many times, the lining of her stomach was pulled out to the surface. Gastrostomy #3. She starts throwing up for the next 5 days after surgery. Come to find out the balloon blocking the opening to the intestines. Insert a G-J tube, but with all the wretching, the Nissen is out. G-J tube is a pain (it comes out all the time.) Gastrostomy #4 to move the stoma out from in front of the intestines and another Nissen. (Side note: Rebekah's airway shuts down the day after surgery & Pedi ICU team does emergency intubation) Rebekah starts throwing up with feedings. Nissen slipped - again. Surgeon goes in to redo Nissen and perform tracheostomy. Mom get call from OR - Surgeon can't get to stomach - too much scar tissue - will perform jejunostomy. Back to present... Rebekah gets fed through her J-tube. The G-button is just there for looks. Actually, her surgeon in Dallas wanted to keep the button in place until he could redo the Nissen " when she gets bigger " and her wouldn't have to put her through another gastrostomy. Here in Houston, her surgeon said " these kids " (yuk) don't do well with Nissens and he wants to do a different jejunostomy (the one she has right now is held on be tape so one good tug from her 2 year old brother sends us to the ER). The GI says that she should use her stomach - I guess with hopes that she will eventually eat orally. I guess I was wondering if kids with CHARGE tend to be prone to Nissens slipping and prolapsing their stomachs. Thanks for the help. Paz, --- Graeme & Weir wrote: > , > From what I have been able to ascertain from > the list, there are a number of the kids with > fundos. My daughter has a Nissen > fundoplication (full wrap), but I am sure there > are others with a Thal wrap (this is a partial > wrapping). I am not sure on repeat > gastrostomies...you mean if they come off the > tube, their stoma heals then they get the > gastrostomy done again? > Why do they want to get off the g button? > Is she still refluxing a lot? I'd go with a > Nissen instead of a j tube, but that's just my > opinion.... > Weir > Mom to Kennedy 4yr old CHARGEr, 12, > 10, and wife to Graeme > New Brunswick, Canada > Visit the " Weir homepage " at: > http://personal.nbnet.nb.ca/gweir > ICQ #1426476 > > " In three words I can sum up everything I've > learned about life: it goes on. " > - Frost > > > > > Re: Questions for the > doctor > > > Hi all, > > I just recently joined the group and I think > I am > coming in on this midway through the thread. > > I was curious if repeat fundoplications are > typical for kids with CHARGE? What about > repeat > gastrostomies? > > GI-wise, Rebekah (my 4 year old with CHARGE) > has > had 2 Nissens, 4 gastrostomies, and finally a > jejunostomy when the doctor could not get > through > the scar tissue to redo the last Nissen. > Presently she has a dual intake manifold > (G-Button and J-tube), but the surgeon thinks > she > may have prolasped her stomach again. > > We recently relocated to Houston from Dallas. > Of > course, we have to see all new doctors and > they > are driving me crazy with wanting to do > everything different. > > The GI wants to try a different type of Fundo > (anyone heard of a Tahl?)and get her to use > her > stomach again. The surgeon want to do a > Rue-N-Y > (sounds like " ruin-why? to me!). which is a > different kind of jejunostomy than what she > has, > so she can get rid of the g-button. > > The ENT wants to decanullate (sp?) her, but > the > doc is Dallas was quite happy with the > situation > (breathing is a good thing -right?) I am > scared > to go see any of the other 12 specialist. I > thought we had just got her stable and here > everyone wants to overhaul her. > > Paz, > > > > > > > > --- TKRENCICK1@... wrote: > > What were Aubrie's symtoms that led the > docs to > > do the fundo again? My son > > had the Nissen type at a young age and now > at > > 11 they are looking into the > > need to redo it. His bronch showed no > > aspiration in the lungs but did show > > an inflamed area in the esophagus which may > > suggest some reflux. I dont want > > to have him go through another surgery. He > > will go for an upper GI in March > > to check the wrap area. Krencicki re: > > BRadley > > > > > > [Non-text portions of this message have > been > > removed] > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2002 Report Share Posted February 19, 2002 , I was wondering if keeping the fundos intact are a common problem. And if the gastrostomies tend to prolapse. Rebekah's new surgeon has experience with another kid with CHARGE and says he has had the same problem. Little bit of Rebekah's med history... She got a gastrostomy and Nissen at a week old. while still in NICU, she pulled out the G-tube, the surgeon couldn't re-insert so gastrostomy #2. Around 10 months, she had pulled the button out so many times, the lining of her stomach was pulled out to the surface. Gastrostomy #3. She starts throwing up for the next 5 days after surgery. Come to find out the balloon blocking the opening to the intestines. Insert a G-J tube, but with all the wretching, the Nissen is out. G-J tube is a pain (it comes out all the time.) Gastrostomy #4 to move the stoma out from in front of the intestines and another Nissen. (Side note: Rebekah's airway shuts down the day after surgery & Pedi ICU team does emergency intubation) Rebekah starts throwing up with feedings. Nissen slipped - again. Surgeon goes in to redo Nissen and perform tracheostomy. Mom get call from OR - Surgeon can't get to stomach - too much scar tissue - will perform jejunostomy. Back to present... Rebekah gets fed through her J-tube. The G-button is just there for looks. Actually, her surgeon in Dallas wanted to keep the button in place until he could redo the Nissen " when she gets bigger " and her wouldn't have to put her through another gastrostomy. Here in Houston, her surgeon said " these kids " (yuk) don't do well with Nissens and he wants to do a different jejunostomy (the one she has right now is held on be tape so one good tug from her 2 year old brother sends us to the ER). The GI says that she should use her stomach - I guess with hopes that she will eventually eat orally. I guess I was wondering if kids with CHARGE tend to be prone to Nissens slipping and prolapsing their stomachs. Thanks for the help. Paz, --- Graeme & Weir wrote: > , > From what I have been able to ascertain from > the list, there are a number of the kids with > fundos. My daughter has a Nissen > fundoplication (full wrap), but I am sure there > are others with a Thal wrap (this is a partial > wrapping). I am not sure on repeat > gastrostomies...you mean if they come off the > tube, their stoma heals then they get the > gastrostomy done again? > Why do they want to get off the g button? > Is she still refluxing a lot? I'd go with a > Nissen instead of a j tube, but that's just my > opinion.... > Weir > Mom to Kennedy 4yr old CHARGEr, 12, > 10, and wife to Graeme > New Brunswick, Canada > Visit the " Weir homepage " at: > http://personal.nbnet.nb.ca/gweir > ICQ #1426476 > > " In three words I can sum up everything I've > learned about life: it goes on. " > - Frost > > > > > Re: Questions for the > doctor > > > Hi all, > > I just recently joined the group and I think > I am > coming in on this midway through the thread. > > I was curious if repeat fundoplications are > typical for kids with CHARGE? What about > repeat > gastrostomies? > > GI-wise, Rebekah (my 4 year old with CHARGE) > has > had 2 Nissens, 4 gastrostomies, and finally a > jejunostomy when the doctor could not get > through > the scar tissue to redo the last Nissen. > Presently she has a dual intake manifold > (G-Button and J-tube), but the surgeon thinks > she > may have prolasped her stomach again. > > We recently relocated to Houston from Dallas. > Of > course, we have to see all new doctors and > they > are driving me crazy with wanting to do > everything different. > > The GI wants to try a different type of Fundo > (anyone heard of a Tahl?)and get her to use > her > stomach again. The surgeon want to do a > Rue-N-Y > (sounds like " ruin-why? to me!). which is a > different kind of jejunostomy than what she > has, > so she can get rid of the g-button. > > The ENT wants to decanullate (sp?) her, but > the > doc is Dallas was quite happy with the > situation > (breathing is a good thing -right?) I am > scared > to go see any of the other 12 specialist. I > thought we had just got her stable and here > everyone wants to overhaul her. > > Paz, > > > > > > > > --- TKRENCICK1@... wrote: > > What were Aubrie's symtoms that led the > docs to > > do the fundo again? My son > > had the Nissen type at a young age and now > at > > 11 they are looking into the > > need to redo it. His bronch showed no > > aspiration in the lungs but did show > > an inflamed area in the esophagus which may > > suggest some reflux. I dont want > > to have him go through another surgery. He > > will go for an upper GI in March > > to check the wrap area. Krencicki re: > > BRadley > > > > > > [Non-text portions of this message have > been > > removed] > > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2002 Report Share Posted February 19, 2002 , Why were his gastrostomies moved? Rebekah prolapsed her stomach and had to have it moved and I am worried she has done it again. What about the G and J tube thing? Why did he have both? It sounds a lot like what Rebekah has had. More info please. I am scared to put her through more surgeries. They never turn out as predicted. Paz, --- KAV427@... wrote: > In a message dated 2/18/02 6:46:18 AM Central > Standard Time, > kbushnell9@... writes: > > > > What about repeat > > gastrostomies? > > > > Hi there, > My son Mark had several > gastrostomies. He also had a jejunostomy > at one point along with a gastrostomy. His was > moved a few times due to > surgeries. His digestive problems were TEF > tracheo-esophageal fistula, > duodenal stenosis, Nissen fundal plycation. His > feeding abilities were very > poor and as of now he just takes soft diet and > ground solids at 18. > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2002 Report Share Posted February 19, 2002 , Why were his gastrostomies moved? Rebekah prolapsed her stomach and had to have it moved and I am worried she has done it again. What about the G and J tube thing? Why did he have both? It sounds a lot like what Rebekah has had. More info please. I am scared to put her through more surgeries. They never turn out as predicted. Paz, --- KAV427@... wrote: > In a message dated 2/18/02 6:46:18 AM Central > Standard Time, > kbushnell9@... writes: > > > > What about repeat > > gastrostomies? > > > > Hi there, > My son Mark had several > gastrostomies. He also had a jejunostomy > at one point along with a gastrostomy. His was > moved a few times due to > surgeries. His digestive problems were TEF > tracheo-esophageal fistula, > duodenal stenosis, Nissen fundal plycation. His > feeding abilities were very > poor and as of now he just takes soft diet and > ground solids at 18. > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2002 Report Share Posted February 19, 2002 , Why were his gastrostomies moved? Rebekah prolapsed her stomach and had to have it moved and I am worried she has done it again. What about the G and J tube thing? Why did he have both? It sounds a lot like what Rebekah has had. More info please. I am scared to put her through more surgeries. They never turn out as predicted. Paz, --- KAV427@... wrote: > In a message dated 2/18/02 6:46:18 AM Central > Standard Time, > kbushnell9@... writes: > > > > What about repeat > > gastrostomies? > > > > Hi there, > My son Mark had several > gastrostomies. He also had a jejunostomy > at one point along with a gastrostomy. His was > moved a few times due to > surgeries. His digestive problems were TEF > tracheo-esophageal fistula, > duodenal stenosis, Nissen fundal plycation. His > feeding abilities were very > poor and as of now he just takes soft diet and > ground solids at 18. > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2002 Report Share Posted February 20, 2002 , Marks gastrostomies were changed during subsequent surgeries. He had his first tube at 2 days old. It was changed when he had his TEF repair and moved again when he had his Nissen Fundal plycation surgery. He had a J tube and a G tube for a while before his Nissen surgery due to severe reflux. After suffering 2 aspiration pneumonias. He was only fed by J tube for a while. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2002 Report Share Posted February 20, 2002 , Marks gastrostomies were changed during subsequent surgeries. He had his first tube at 2 days old. It was changed when he had his TEF repair and moved again when he had his Nissen Fundal plycation surgery. He had a J tube and a G tube for a while before his Nissen surgery due to severe reflux. After suffering 2 aspiration pneumonias. He was only fed by J tube for a while. Quote Link to comment Share on other sites More sharing options...
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