Guest guest Posted May 14, 2008 Report Share Posted May 14, 2008 Phoebe had a Nissen fundiplication along with a gtube placement. Should I email her privately? Dinkins-Borkowski; Nolan(5) nocf, Phoebe(3) Ds & cf Phoebe Updates CLICK HERE " The future belongs to those who believe in the beauty of their dreams. " – Eleanor Roosevelt From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of Kathy Ratkiewicz Sent: Wednesday, May 14, 2008 8:30 PM To: DownSyndromeInfoExchange ; 'Down Syndrome' Subject: [DownSyndromeInfoExchange] Nissen? Has anyone’s child had a Nissen done? A friend’s baby has been having a lot of problems with reflux and aspiration pneumonia, and it has been recommended that she have a Nissen…the mom would like to hear pros and cons. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2008 Report Share Posted May 15, 2008 also has a nissenwith g tube placement. Do I email her off list? Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2008 Report Share Posted May 15, 2008 has a nissen fundo when he got his feeding tube put in. We have had no problems at all. But he can still vomit a bit, and does sill have some reflux. He has aspirated 3x's in 9 yrs. Only once did it cause pneumonia. And it was easily handled. Prior to the Nissen, was a different story. I don't have any negative response for ya.   Romero -- [DownSyndromeInfoExchange] Nissen? Has anyone’s child had a Nissen done? A friend’s baby has been having a lot of problems with reflux and aspiration pneumonia, and it has been recommended that she have a Nissen…the mom would like to hear pros and cons. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2008 Report Share Posted May 15, 2008 I think its fine to reply here. Shes probably not the only one with this question.   Romero -- Re: [DownSyndromeInfoExchange] Nissen? also has a nissenwith g tube placement. Do Iemail her off list?Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2008 Report Share Posted May 15, 2008 I think its fine to reply here. Shes probably not the only one with this question.   Romero -- Re: [DownSyndromeInfoExchange] Nissen? also has a nissenwith g tube placement. Do Iemail her off list?Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2008 Report Share Posted May 15, 2008 Either way is fine.. if you post here, I can(and have been) pass(ing) the replies on to her..(she is not on the listserv) From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of ~ Romero~ Sent: Thursday, May 15, 2008 8:09 PM To: DownSyndromeInfoExchange Subject: Re: [DownSyndromeInfoExchange] Nissen? I think its fine to reply here. Shes probably not the only one with this question.   Romero -- Re: [DownSyndromeInfoExchange] Nissen? also has a nissenwith g tube placement. Do I email her off list? Janet  Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2008 Report Share Posted May 15, 2008 Either way is fine.. if you post here, I can(and have been) pass(ing) the replies on to her..(she is not on the listserv) From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of ~ Romero~ Sent: Thursday, May 15, 2008 8:09 PM To: DownSyndromeInfoExchange Subject: Re: [DownSyndromeInfoExchange] Nissen? I think its fine to reply here. Shes probably not the only one with this question.   Romero -- Re: [DownSyndromeInfoExchange] Nissen? also has a nissenwith g tube placement. Do I email her off list? Janet  Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2008 Report Share Posted May 15, 2008 Ok, thank you for taking care of that! Hugs, Dinkins-Borkowski; Nolan(5) nocf, Phoebe(3) Ds & cf Phoebe Updates CLICK HERE " The future belongs to those who believe in the beauty of their dreams. " – Eleanor Roosevelt From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of Kathy Ratkiewicz Sent: Thursday, May 15, 2008 8:09 PM To: DownSyndromeInfoExchange Subject: RE: [DownSyndromeInfoExchange] Nissen? Either way is fine.. if you post here, I can(and have been) pass(ing) the replies on to her..(she is not on the listserv) From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of ~ Romero~ Sent: Thursday, May 15, 2008 8:09 PM To: DownSyndromeInfoExchange Subject: Re: [DownSyndromeInfoExchange] Nissen? I think its fine to reply here. Shes probably not the only one with this question.   Romero -------Original Message------- From: joehill1972 shortwave Date: 5/15/2008 10:25:28 AM To: DownSyndromeInfoExchange Subject: Re: [DownSyndromeInfoExchange] Nissen? also has a nissenwith g tube placement. Do I email her off list? Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2008 Report Share Posted May 15, 2008 had his nissen and g tube placement at 3 months old. Before that time in NICU he had several aspirated pneumonias and was fed by OG (tube down mouth). When the ENT scoped my son, his flap at bottom of esophagus was wide open and did not close at all. Unfortunately, at age 5-7, he started getting a lot of pneumonias, junky lungs, trouble breathing. No one knew what the problem was. I wish I had $20 for everytime I asked if it could be the nissen. " OH no, that is very rare that it would come undone. " It was shown on an upper GI and CAT scans that yes it had come undone (ruptured) and had been driven upwards through my son's diaphgram, which was itself pushing upwards towards my son's lungs. We had surgery, during which time 's lungs collapsed and he had to have LOTS os suctioning, every 3-4 hrs. )That is so terrible to watch and go through) We found out in 2005, (we had moved so we had a new GI doc.) that 's nissen is now quite enlarged and is acting like a stomach for his food because the ped surgeon who fixed the nissen made it too tight.Our GI dr. knows the ped surgeon and is just scratching his head about it. Anyway has had to have the nissen dilated three times: it is now at 12ml and he is doing pretty well. We have been finally given the o.k. to eat anything we want and to swallow pills again. (So ends our first saga of medical problems , if you know of our story.) And NO CANNOT vomit. Which when he has been sick enough to, it is awful to see him retching or trying to vomit and nothing happen. Janet H Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2008 Report Share Posted May 15, 2008 oops, didn't finish.... had several yrs of esophagitis. Esophagitis very inflammed, raw, blistered, reflux, also yeast (a diff problem)in esophagus. Dr. comment " I don't see how he can even swallow. The pain must be excruitating, let alone want to eat orally. " Even though we are now on meds and upper GI shows that food once in stomach cannot travel upwards b/c nissen/fundo is too tight we are still dealing with relux/ GERD. Drs. are still puzzled. Janet H Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2008 Report Share Posted May 17, 2008 Hello Kathy was a candidate for a nissen about 1.5 years ago. He had severe reflux which nearly stopped when we put him on the SCD, but that was another story. Anyway, our pead. GI strongly advised us not to have a nissen fundo done on . He explained to us that the surgeons usually are full of praise for this kind of thing, as it is a very simple operation, but in contrast to these the paediatricians and GI specialists who have the same children in their clinics for the ensuing years of childhood then are actually confronted with the after effects of the operation. The stories he told us weren't nice: children who couldn't burp, had feeding issues or weren't able to swallow right, food getting lodged in their esophagus (esp. in the case of kids with DS who often don't chew their food thoroughly), not being able to vomit if it was necessary (stomach flu etc.) and so forth. I was made aware of a very good parent support website called infantrefluxdisease, where all issues concerning reflux and related complications and therapies are explained in detail. There is also a very well frequented message board with all kinds of reflux related subjects being discussed, including nissen fundoplication (not the only possible fundo available, by the way). The case against operating a baby is even stronger. The main point is that the stomach and esophagus of a baby will be growing a great deal over the following few years, causing distortions in places where the child has been operated on. Especially with nissens this can mean many more operations or dilatation interventions during childhood. Usually the reflux resolves by itself as soon as the child starts sitting a lot or starts walking. I was told that in Switzerland a nissen is an absolute last resort for severely handicapped or brain damaged children. finally got a ng-tube and was connected to the bottle only when he was sleeping. Strangely, this kept him from refluxing his pediasure. The j-tube is another possibility. Instead of ending in the stomach it goes as far as the first part of the small intestine (J=jejunum) which in nearly every case puts a definite stop to reflux. Although having a feeding tube isn't a nice thing, babies usually don't seem to mind them and they are definitely a better and less invasive option than a nissen. But that's just my two pennies worth. Here's the link: http://www.infantrefluxdisease.com/forums/ /Zurich-Switzerland > > Has anyone's child had a Nissen done? A friend's baby has been having a lot > of problems with reflux and aspiration pneumonia, and it has been > recommended that she have a Nissen.the mom would like to hear pros and cons. > > Thanks! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2008 Report Share Posted May 17, 2008 Hi - Actually, I told my friend about a few days ago because she was thinking about trying the SCD with her daughter. She is just at her wit’s end trying to figure out what is going on with her child..was supposed to have an MRA/MRI done the other day, but they had to stop the procedure because her heart rate dipped into the 30’s when she was sedated. Thanks to everyone who has posted about this…I am passing them all on. From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of Müller Sent: Saturday, May 17, 2008 8:54 AM To: DownSyndromeInfoExchange Subject: [DownSyndromeInfoExchange] Re: Nissen? Hello Kathy was a candidate for a nissen about 1.5 years ago. He had severe reflux which nearly stopped when we put him on the SCD, but that was another story. Anyway, our pead. GI strongly advised us not to have a nissen fundo done on . He explained to us that the surgeons usually are full of praise for this kind of thing, as it is a very simple operation, but in contrast to these the paediatricians and GI specialists who have the same children in their clinics for the ensuing years of childhood then are actually confronted with the after effects of the operation. The stories he told us weren't nice: children who couldn't burp, had feeding issues or weren't able to swallow right, food getting lodged in their esophagus (esp. in the case of kids with DS who often don't chew their food thoroughly), not being able to vomit if it was necessary (stomach flu etc.) and so forth. I was made aware of a very good parent support website called infantrefluxdisease, where all issues concerning reflux and related complications and therapies are explained in detail. There is also a very well frequented message board with all kinds of reflux related subjects being discussed, including nissen fundoplication (not the only possible fundo available, by the way). The case against operating a baby is even stronger. The main point is that the stomach and esophagus of a baby will be growing a great deal over the following few years, causing distortions in places where the child has been operated on. Especially with nissens this can mean many more operations or dilatation interventions during childhood. Usually the reflux resolves by itself as soon as the child starts sitting a lot or starts walking. I was told that in Switzerland a nissen is an absolute last resort for severely handicapped or brain damaged children. finally got a ng-tube and was connected to the bottle only when he was sleeping. Strangely, this kept him from refluxing his pediasure. The j-tube is another possibility. Instead of ending in the stomach it goes as far as the first part of the small intestine (J=jejunum) which in nearly every case puts a definite stop to reflux. Although having a feeding tube isn't a nice thing, babies usually don't seem to mind them and they are definitely a better and less invasive option than a nissen. But that's just my two pennies worth. Here's the link: http://www.infantrefluxdisease.com/forums/ /Zurich-Switzerland > > Has anyone's child had a Nissen done? A friend's baby has been having a lot > of problems with reflux and aspiration pneumonia, and it has been > recommended that she have a Nissen.the mom would like to hear pros and cons. > > Thanks! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2008 Report Share Posted May 17, 2008 Hi - Actually, I told my friend about a few days ago because she was thinking about trying the SCD with her daughter. She is just at her wit’s end trying to figure out what is going on with her child..was supposed to have an MRA/MRI done the other day, but they had to stop the procedure because her heart rate dipped into the 30’s when she was sedated. Thanks to everyone who has posted about this…I am passing them all on. From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of Müller Sent: Saturday, May 17, 2008 8:54 AM To: DownSyndromeInfoExchange Subject: [DownSyndromeInfoExchange] Re: Nissen? Hello Kathy was a candidate for a nissen about 1.5 years ago. He had severe reflux which nearly stopped when we put him on the SCD, but that was another story. Anyway, our pead. GI strongly advised us not to have a nissen fundo done on . He explained to us that the surgeons usually are full of praise for this kind of thing, as it is a very simple operation, but in contrast to these the paediatricians and GI specialists who have the same children in their clinics for the ensuing years of childhood then are actually confronted with the after effects of the operation. The stories he told us weren't nice: children who couldn't burp, had feeding issues or weren't able to swallow right, food getting lodged in their esophagus (esp. in the case of kids with DS who often don't chew their food thoroughly), not being able to vomit if it was necessary (stomach flu etc.) and so forth. I was made aware of a very good parent support website called infantrefluxdisease, where all issues concerning reflux and related complications and therapies are explained in detail. There is also a very well frequented message board with all kinds of reflux related subjects being discussed, including nissen fundoplication (not the only possible fundo available, by the way). The case against operating a baby is even stronger. The main point is that the stomach and esophagus of a baby will be growing a great deal over the following few years, causing distortions in places where the child has been operated on. Especially with nissens this can mean many more operations or dilatation interventions during childhood. Usually the reflux resolves by itself as soon as the child starts sitting a lot or starts walking. I was told that in Switzerland a nissen is an absolute last resort for severely handicapped or brain damaged children. finally got a ng-tube and was connected to the bottle only when he was sleeping. Strangely, this kept him from refluxing his pediasure. The j-tube is another possibility. Instead of ending in the stomach it goes as far as the first part of the small intestine (J=jejunum) which in nearly every case puts a definite stop to reflux. Although having a feeding tube isn't a nice thing, babies usually don't seem to mind them and they are definitely a better and less invasive option than a nissen. But that's just my two pennies worth. Here's the link: http://www.infantrefluxdisease.com/forums/ /Zurich-Switzerland > > Has anyone's child had a Nissen done? A friend's baby has been having a lot > of problems with reflux and aspiration pneumonia, and it has been > recommended that she have a Nissen.the mom would like to hear pros and cons. > > Thanks! > Quote Link to comment Share on other sites More sharing options...
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