Guest guest Posted October 5, 2006 Report Share Posted October 5, 2006 Max got a Gtube and Nissen last fall (at 4 months old) and he is now 15 months old. For the past 6 months, he has been able to vomit when necessary...which I understand is ok with a Nissen. However, in recent months his vomiting is much more frequent and the doctors believe the Nissen has failed. However, we did an Upper GI this summer, and it showed no reflux. In recent weeks, it seems to have worsened even more despite lowering his feeding rate. I am meeting with the surgeon in two weeks to discuss various options but his nurse warned me yesterday that it is difficult to repair a failed Nissen and there is more potential for complications. Max's pulmonogist and PCP both feel we should not do surgery because he has not developed pneumonia (lots of respiratory bugs but has always been able to conquer them with a little help) or had MAJOR illnesses from any aspiration. Additionally he has been able to gain weight despite the vomiting. I am at a loss for what to do. Some days are ok and then others we have to be soooo vigilant about his feeds. Any thoughts? And I would really, really, really rather not do a GJ because he is getting quite mobile these days (which I love) and I don't know how in the world I would keep him on his feeds all day long. Oh and he has been on the same formula recipe for over 10 months now so I can't imagine it's that. I talked to a nurse yesterday that said maybe thickening it might help because it would be harder to reflux. Any suggestions would be great. Thanks everyone!!! Amy and Mighty Max Amy McKinley Mom to MIGHTY MAX -- cHArGEr, 13 months old (11 months corrected) maxupdate.blogspot.com --------------------------------- Get your email and more, right on the new Yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2006 Report Share Posted October 5, 2006 I wish I could help you Amy but I have never had to deal with that but I will be thinking of you and Max. Hugs, Crystal mom to (10), (3), and Eva (17 month old CHARGEr) wife to Dan > > Max got a Gtube and Nissen last fall (at 4 months old) and he is now 15 months old. For the past 6 months, he has been able to vomit when necessary...which I understand is ok with a Nissen. However, in recent months his vomiting is much more frequent and the doctors believe the Nissen has failed. However, we did an Upper GI this summer, and it showed no reflux. > > In recent weeks, it seems to have worsened even more despite lowering his feeding rate. I am meeting with the surgeon in two weeks to discuss various options but his nurse warned me yesterday that it is difficult to repair a failed Nissen and there is more potential for complications. > > Max's pulmonogist and PCP both feel we should not do surgery because he has not developed pneumonia (lots of respiratory bugs but has always been able to conquer them with a little help) or had MAJOR illnesses from any aspiration. Additionally he has been able to gain weight despite the vomiting. > > I am at a loss for what to do. Some days are ok and then others we have to be soooo vigilant about his feeds. Any thoughts? > > And I would really, really, really rather not do a GJ because he is getting quite mobile these days (which I love) and I don't know how in the world I would keep him on his feeds all day long. > > Oh and he has been on the same formula recipe for over 10 months now so I can't imagine it's that. I talked to a nurse yesterday that said maybe thickening it might help because it would be harder to reflux. > > Any suggestions would be great. Thanks everyone!!! > > Amy and Mighty Max > > > Amy McKinley > Mom to MIGHTY MAX -- cHArGEr, 13 months old (11 months corrected) > maxupdate.blogspot.com > > --------------------------------- > Get your email and more, right on the new Yahoo.com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2006 Report Share Posted October 5, 2006 Thickening might help - I would try it. Also if you have to make the feeds even smaller for a while and see if that helps, then build back up. A GJ won't necessarily eradicate reflux, they can and do still reflux their stomach juices. I worked with a little boy who had a repeat Nissen and the repeat has lasted for years now. Tough decisions to make - keep us posted... http://www.chargesyndrome.info > > Max got a Gtube and Nissen last fall (at 4 months old) and he is now 15 > months old. For the past 6 months, he has been able to vomit when > necessary...which I understand is ok with a Nissen. However, in recent > months his vomiting is much more frequent and the doctors believe the Nissen > has failed. However, we did an Upper GI this summer, and it showed no > reflux. > > In recent weeks, it seems to have worsened even more despite lowering his > feeding rate. I am meeting with the surgeon in two weeks to discuss various > options but his nurse warned me yesterday that it is difficult to repair a > failed Nissen and there is more potential for complications. > > Max's pulmonogist and PCP both feel we should not do surgery because he > has not developed pneumonia (lots of respiratory bugs but has always been > able to conquer them with a little help) or had MAJOR illnesses from any > aspiration. Additionally he has been able to gain weight despite the > vomiting. > > I am at a loss for what to do. Some days are ok and then others we have to > be soooo vigilant about his feeds. Any thoughts? > > And I would really, really, really rather not do a GJ because he is > getting quite mobile these days (which I love) and I don't know how in the > world I would keep him on his feeds all day long. > > Oh and he has been on the same formula recipe for over 10 months now so I > can't imagine it's that. I talked to a nurse yesterday that said maybe > thickening it might help because it would be harder to reflux. > > Any suggestions would be great. Thanks everyone!!! > > Amy and Mighty Max > > Amy McKinley > Mom to MIGHTY MAX -- cHArGEr, 13 months old (11 months corrected) > maxupdate.blogspot.com > > --------------------------------- > Get your email and more, right on the new Yahoo.com <http://yahoo.com/> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2006 Report Share Posted October 5, 2006 Hello, My son was 4 months when his came undone. This past march he go it redone. He is doing fine. The first one was laproscopic but the redo they opened him up and did it that way. He is doing fine. Before he had it done he was on continuous feeding. Ethan (CHARGER), Annette (Mom) Amy McKinley wrote: Max got a Gtube and Nissen last fall (at 4 months old) and he is now 15 months old. For the past 6 months, he has been able to vomit when necessary...which I understand is ok with a Nissen. However, in recent months his vomiting is much more frequent and the doctors believe the Nissen has failed. However, we did an Upper GI this summer, and it showed no reflux. In recent weeks, it seems to have worsened even more despite lowering his feeding rate. I am meeting with the surgeon in two weeks to discuss various options but his nurse warned me yesterday that it is difficult to repair a failed Nissen and there is more potential for complications. Max's pulmonogist and PCP both feel we should not do surgery because he has not developed pneumonia (lots of respiratory bugs but has always been able to conquer them with a little help) or had MAJOR illnesses from any aspiration. Additionally he has been able to gain weight despite the vomiting. I am at a loss for what to do. Some days are ok and then others we have to be soooo vigilant about his feeds. Any thoughts? And I would really, really, really rather not do a GJ because he is getting quite mobile these days (which I love) and I don't know how in the world I would keep him on his feeds all day long. Oh and he has been on the same formula recipe for over 10 months now so I can't imagine it's that. I talked to a nurse yesterday that said maybe thickening it might help because it would be harder to reflux. Any suggestions would be great. Thanks everyone!!! Amy and Mighty Max Amy McKinley Mom to MIGHTY MAX -- cHArGEr, 13 months old (11 months corrected) maxupdate.blogspot.com --------------------------------- Get your email and more, right on the new Yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2006 Report Share Posted October 6, 2006 Amy - Ethan has never had a nissen, but we discussed it many times. He used to vomit often and went through a time period when he was around 18 months old that we went to get another GI opinion. All the doctors we saw said the same thing. A nissen was not recommended because he was not get pneumonia and he was gaining weight, even with the vomiting. He does have a trach though so that protected him somewhat from aspiration. At that point, we switched his reflux med to Prevacid Solutab and that seemed to do the trick with the vomiting. Now he only vomits when he is sick and has too many secretions to handle. I don't know what reflux meds Max is on, but prevacid was the answer for Ethan. Jody Jody - mom to Ethan (ChARGE) and --------------------------------- Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2006 Report Share Posted October 6, 2006 amy i knew youd get5 advixe in here love you xxxxxx > > Hello, > My son was 4 months when his came undone. This past march he go it redone. > He is doing fine. The first one was laproscopic but the redo they opened him > up and did it that way. He is doing fine. Before he had it done he was on > continuous feeding. > > Ethan (CHARGER), Annette (Mom) > > Amy McKinley <amysmckinley@... <amysmckinley%40yahoo.com>> wrote: > Max got a Gtube and Nissen last fall (at 4 months old) and he is now 15 > months old. For the past 6 months, he has been able to vomit when > necessary...which I understand is ok with a Nissen. However, in recent > months his vomiting is much more frequent and the doctors believe the Nissen > has failed. However, we did an Upper GI this summer, and it showed no > reflux. > > In recent weeks, it seems to have worsened even more despite lowering his > feeding rate. I am meeting with the surgeon in two weeks to discuss various > options but his nurse warned me yesterday that it is difficult to repair a > failed Nissen and there is more potential for complications. > > Max's pulmonogist and PCP both feel we should not do surgery because he > has not developed pneumonia (lots of respiratory bugs but has always been > able to conquer them with a little help) or had MAJOR illnesses from any > aspiration. Additionally he has been able to gain weight despite the > vomiting. > > I am at a loss for what to do. Some days are ok and then others we have to > be soooo vigilant about his feeds. Any thoughts? > > And I would really, really, really rather not do a GJ because he is > getting quite mobile these days (which I love) and I don't know how in the > world I would keep him on his feeds all day long. > > Oh and he has been on the same formula recipe for over 10 months now so I > can't imagine it's that. I talked to a nurse yesterday that said maybe > thickening it might help because it would be harder to reflux. > > Any suggestions would be great. Thanks everyone!!! > > Amy and Mighty Max > > Amy McKinley > Mom to MIGHTY MAX -- cHArGEr, 13 months old (11 months corrected) > maxupdate.blogspot.com > > --------------------------------- > Get your email and more, right on the new Yahoo.com <http://yahoo.com/> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2006 Report Share Posted October 6, 2006 amy as you know as i e told you in the blog ive had many failiures and was on home tpn for a number of year > > Amy - Ethan has never had a nissen, but we discussed it many times. He > used to vomit often and went through a time period when he was around 18 > months old that we went to get another GI opinion. All the doctors we saw > said the same thing. A nissen was not recommended because he was not get > pneumonia and he was gaining weight, even with the vomiting. He does have a > trach though so that protected him somewhat from aspiration. At that point, > we switched his reflux med to Prevacid Solutab and that seemed to do the > trick with the vomiting. Now he only vomits when he is sick and has too many > secretions to handle. I don't know what reflux meds Max is on, but prevacid > was the answer for Ethan. > > Jody > > Jody - mom to Ethan (ChARGE) and > > --------------------------------- > Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates > starting at 1¢/min. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2006 Report Share Posted October 6, 2006 And why did they decide to redo it? Was he having aspiration or weight issues? Annette Medina wrote: Hello, My son was 4 months when his came undone. This past march he go it redone. He is doing fine. The first one was laproscopic but the redo they opened him up and did it that way. He is doing fine. Before he had it done he was on continuous feeding. Ethan (CHARGER), Annette (Mom) Amy McKinley wrote: Max got a Gtube and Nissen last fall (at 4 months old) and he is now 15 months old. For the past 6 months, he has been able to vomit when necessary...which I understand is ok with a Nissen. However, in recent months his vomiting is much more frequent and the doctors believe the Nissen has failed. However, we did an Upper GI this summer, and it showed no reflux. In recent weeks, it seems to have worsened even more despite lowering his feeding rate. I am meeting with the surgeon in two weeks to discuss various options but his nurse warned me yesterday that it is difficult to repair a failed Nissen and there is more potential for complications. Max's pulmonogist and PCP both feel we should not do surgery because he has not developed pneumonia (lots of respiratory bugs but has always been able to conquer them with a little help) or had MAJOR illnesses from any aspiration. Additionally he has been able to gain weight despite the vomiting. I am at a loss for what to do. Some days are ok and then others we have to be soooo vigilant about his feeds. Any thoughts? And I would really, really, really rather not do a GJ because he is getting quite mobile these days (which I love) and I don't know how in the world I would keep him on his feeds all day long. Oh and he has been on the same formula recipe for over 10 months now so I can't imagine it's that. I talked to a nurse yesterday that said maybe thickening it might help because it would be harder to reflux. Any suggestions would be great. Thanks everyone!!! Amy and Mighty Max Amy McKinley Mom to MIGHTY MAX -- cHArGEr, 13 months old (11 months corrected) maxupdate.blogspot.com --------------------------------- Get your email and more, right on the new Yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2006 Report Share Posted October 6, 2006 Amy, Sorry if I'm repeating questions, I have a lot of posts still to read. How much does Max vomit? I'm only asking because Raegan is 16 months and she has 8 teeth, since her first tooth irrupted, at 8 months, she has episodes where she vomits at the end of a feed, or even 15 minutes later. We notice that this occurs only during teething when she has extra saliva and mucus, especially after she wakes up. We find that giving Raegan water first through her tube helps, about 2 oz, then wait 15 minutes and proceed with the feeding. She currently takes 280 cc's three times daily of Pediasure. Hope this helps, it's so frustrating, we went all summer without any vomiting, and now she teething again and it's started up again. As of Monday, I think we're under control...for now! Good luck. Judy Amy McKinley wrote: Max got a Gtube and Nissen last fall (at 4 months old) and he is now 15 months old. For the past 6 months, he has been able to vomit when necessary...which I understand is ok with a Nissen. However, in recent months his vomiting is much more frequent and the doctors believe the Nissen has failed. However, we did an Upper GI this summer, and it showed no reflux. In recent weeks, it seems to have worsened even more despite lowering his feeding rate. I am meeting with the surgeon in two weeks to discuss various options but his nurse warned me yesterday that it is difficult to repair a failed Nissen and there is more potential for complications. Max's pulmonogist and PCP both feel we should not do surgery because he has not developed pneumonia (lots of respiratory bugs but has always been able to conquer them with a little help) or had MAJOR illnesses from any aspiration. Additionally he has been able to gain weight despite the vomiting. I am at a loss for what to do. Some days are ok and then others we have to be soooo vigilant about his feeds. Any thoughts? And I would really, really, really rather not do a GJ because he is getting quite mobile these days (which I love) and I don't know how in the world I would keep him on his feeds all day long. Oh and he has been on the same formula recipe for over 10 months now so I can't imagine it's that. I talked to a nurse yesterday that said maybe thickening it might help because it would be harder to reflux. Any suggestions would be great. Thanks everyone!!! Amy and Mighty Max Amy McKinley Mom to MIGHTY MAX -- cHArGEr, 13 months old (11 months corrected) maxupdate.blogspot.com --------------------------------- Get your email and more, right on the new Yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2006 Report Share Posted October 6, 2006 Although Meagan's formula is somewhat thick, she cannot handle the " thinness of it. For every 200 cc's we give her, we add a quarter cup of Gerber oatmeal. It thickens it to a heavy enough consistency that she doesn't seem to reflux it up. It also tags on a nice amount of extra calories which she drastically needs at the moment! She also is on Reglan and Prevacid. The dose of the Reglan is just about non therapeutic (she is being weaned from it now), so it's probably the Prevacid helping to do the trick. , mommy to Meagan (CHaRgE) and 23 3/4 month twins, and big brother 4 years, married to the best daddy in the world for 9 years! -- FAILED NISSEN? Max got a Gtube and Nissen last fall (at 4 months old) and he is now 15 months old. For the past 6 months, he has been able to vomit when necessary. ..which I understand is ok with a Nissen. However, in recent months his vomiting is much more frequent and the doctors believe the Nissen has failed However, we did an Upper GI this summer, and it showed no reflux. In recent weeks, it seems to have worsened even more despite lowering his feeding rate. I am meeting with the surgeon in two weeks to discuss various options but his nurse warned me yesterday that it is difficult to repair a failed Nissen and there is more potential for complications. Max's pulmonogist and PCP both feel we should not do surgery because he has not developed pneumonia (lots of respiratory bugs but has always been able to conquer them with a little help) or had MAJOR illnesses from any aspiration. Additionally he has been able to gain weight despite the vomiting. I am at a loss for what to do. Some days are ok and then others we have to be soooo vigilant about his feeds. Any thoughts? And I would really, really, really rather not do a GJ because he is getting quite mobile these days (which I love) and I don't know how in the world I would keep him on his feeds all day long. Oh and he has been on the same formula recipe for over 10 months now so I can't imagine it's that. I talked to a nurse yesterday that said maybe thickening it might help because it would be harder to reflux. Any suggestions would be great. Thanks everyone!!! Amy and Mighty Max Amy McKinley Mom to MIGHTY MAX -- cHArGEr, 13 months old (11 months corrected) maxupdate.blogspot.com --------------------------------- Get your email and more, right on the new Yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2006 Report Share Posted October 9, 2006 Amy This is exactly what we have been going through for the past 12 months, Amelies nissen was done at 4 months and failed at 7 months, she had pulmonary arrests x2 due to several pneumonias and RSV bronchiolitis, its been a terrible time of dilemmas, but as Max is coping well and not having pneumonias and gaining weight I would have to leave well alone. hugs Les x > > Max got a Gtube and Nissen last fall (at 4 months old) and he is now 15 > months old. For the past 6 months, he has been able to vomit when > necessary...which I understand is ok with a Nissen. However, in recent > months his vomiting is much more frequent and the doctors believe the Nissen > has failed. However, we did an Upper GI this summer, and it showed no > reflux. > > In recent weeks, it seems to have worsened even more despite lowering his > feeding rate. I am meeting with the surgeon in two weeks to discuss various > options but his nurse warned me yesterday that it is difficult to repair a > failed Nissen and there is more potential for complications. > > Max's pulmonogist and PCP both feel we should not do surgery because he > has not developed pneumonia (lots of respiratory bugs but has always been > able to conquer them with a little help) or had MAJOR illnesses from any > aspiration. Additionally he has been able to gain weight despite the > vomiting. > > I am at a loss for what to do. Some days are ok and then others we have to > be soooo vigilant about his feeds. Any thoughts? > > And I would really, really, really rather not do a GJ because he is > getting quite mobile these days (which I love) and I don't know how in the > world I would keep him on his feeds all day long. > > Oh and he has been on the same formula recipe for over 10 months now so I > can't imagine it's that. I talked to a nurse yesterday that said maybe > thickening it might help because it would be harder to reflux. > > Any suggestions would be great. Thanks everyone!!! > > Amy and Mighty Max > > Amy McKinley > Mom to MIGHTY MAX -- cHArGEr, 13 months old (11 months corrected) > maxupdate.blogspot.com > > --------------------------------- > Get your email and more, right on the new Yahoo.com <http://yahoo.com/> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2006 Report Share Posted October 12, 2006 He was having aspiration, Amy McKinley wrote: And why did they decide to redo it? Was he having aspiration or weight issues? Annette Medina wrote: Hello, My son was 4 months when his came undone. This past march he go it redone. He is doing fine. The first one was laproscopic but the redo they opened him up and did it that way. He is doing fine. Before he had it done he was on continuous feeding. Ethan (CHARGER), Annette (Mom) Amy McKinley wrote: Max got a Gtube and Nissen last fall (at 4 months old) and he is now 15 months old. For the past 6 months, he has been able to vomit when necessary...which I understand is ok with a Nissen. However, in recent months his vomiting is much more frequent and the doctors believe the Nissen has failed. However, we did an Upper GI this summer, and it showed no reflux. In recent weeks, it seems to have worsened even more despite lowering his feeding rate. I am meeting with the surgeon in two weeks to discuss various options but his nurse warned me yesterday that it is difficult to repair a failed Nissen and there is more potential for complications. Max's pulmonogist and PCP both feel we should not do surgery because he has not developed pneumonia (lots of respiratory bugs but has always been able to conquer them with a little help) or had MAJOR illnesses from any aspiration. Additionally he has been able to gain weight despite the vomiting. I am at a loss for what to do. Some days are ok and then others we have to be soooo vigilant about his feeds. Any thoughts? And I would really, really, really rather not do a GJ because he is getting quite mobile these days (which I love) and I don't know how in the world I would keep him on his feeds all day long. Oh and he has been on the same formula recipe for over 10 months now so I can't imagine it's that. I talked to a nurse yesterday that said maybe thickening it might help because it would be harder to reflux. Any suggestions would be great. Thanks everyone!!! Amy and Mighty Max Amy McKinley Mom to MIGHTY MAX -- cHArGEr, 13 months old (11 months corrected) maxupdate.blogspot.com --------------------------------- Get your email and more, right on the new Yahoo.com Quote Link to comment Share on other sites More sharing options...
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