Guest guest Posted September 11, 2005 Report Share Posted September 11, 2005 Hi Lesley Good to see you here. You should get some answers from people here. I look forward to meeting you and your gang next weekend. Regards Simon > >Reply-To: CHARGE >To: CHARGE >Subject: Fundoplication help! >Date: Sun, 11 Sep 2005 17:02:44 -0000 > >Rather nervously this is my first time on the CHARGE listserv. >Our baby is nine months old and had her Fundoplication surgery in May >05 which proved to be successful and allowed her to start gaining >weight and keep her feed in but all of a sudden recently she has >started to reflux almost back to how she was before surgery. We have >re started her reflux drugs and obviously will be seeing her >consultant next week for her review in the meantime perhaps someone >out there could give me some advice. >Is this common or has her surgery failed or is this type of surgery >one which requires constant monitoring? >I would really appreciate some feed back. > >Many thanks >Lesley mum to Amelie age 9 months > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2005 Report Share Posted September 11, 2005 Lesley, Welcome! Fundoplications are tricky. In so many of our kids they have fabulous results, like you first described. BUT they do fail sometimes. Dylan's first lasted over a year, and then he had MAJOR retching when trying to progress off the baby formula. It took us 9 months of him in misery and inconclusive tests before we elected to redo it. The redo solved the problem and he has not had signs of reflux since and he is now 9years old. Others never have to have them redone and others find they never last with their child. It is such a hard thing to decide for families, but you are right that she should not be having such severe reflux with the fundo intact. I hope you have great doctors who will help you figure something out quickly. Kim > Rather nervously this is my first time on the CHARGE listserv. > Our baby is nine months old and had her Fundoplication surgery in May > 05 which proved to be successful and allowed her to start gaining > weight and keep her feed in but all of a sudden recently she has > started to reflux almost back to how she was before surgery. We have > re started her reflux drugs and obviously will be seeing her > consultant next week for her review in the meantime perhaps someone > out there could give me some advice. > Is this common or has her surgery failed or is this type of surgery > one which requires constant monitoring? > I would really appreciate some feed back. > > Many thanks > Lesley mum to Amelie age 9 months > > > > > > Membership of this email support groups does not constitute membership in the > CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca, or > email info@.... > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org or by calling 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2005 Report Share Posted September 11, 2005 Sorry I left out a connecting thought - the retching from not tolerating the formula caused the Nissen to slip, it was not totally undone, but enough to cause problems. Kim > Lesley, > > Welcome! > Fundoplications are tricky. In so many of our kids they have fabulous > results, like you first described. BUT they do fail sometimes. Dylan's > first lasted over a year, and then he had MAJOR retching when trying to > progress off the baby formula. It took us 9 months of him in misery and > inconclusive tests before we elected to redo it. The redo solved the > problem and he has not had signs of reflux since and he is now 9years old. > > Others never have to have them redone and others find they never last with > their child. It is such a hard thing to decide for families, but you are > right that she should not be having such severe reflux with the fundo > intact. > > I hope you have great doctors who will help you figure something out > quickly. > > Kim > > > > > >> Rather nervously this is my first time on the CHARGE listserv. >> Our baby is nine months old and had her Fundoplication surgery in May >> 05 which proved to be successful and allowed her to start gaining >> weight and keep her feed in but all of a sudden recently she has >> started to reflux almost back to how she was before surgery. We have >> re started her reflux drugs and obviously will be seeing her >> consultant next week for her review in the meantime perhaps someone >> out there could give me some advice. >> Is this common or has her surgery failed or is this type of surgery >> one which requires constant monitoring? >> I would really appreciate some feed back. >> >> Many thanks >> Lesley mum to Amelie age 9 months >> >> >> >> >> >> Membership of this email support groups does not constitute membership in the >> CHARGE Syndrome Foundation or CHARGE Syndrome Canada. >> For information about the CHARGE Syndrome >> Foundation or to become a member (and get the newsletter), >> please contact marion@... or visit >> the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada >> information and membership, please visit http://www.chargesyndrome.ca, or >> email info@.... >> 8th International >> CHARGE Syndrome Conference, July, 2007. Information will be available at >> www.chargesyndrome.org or by calling 1-. >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2005 Report Share Posted September 11, 2005 My son's nissen failed 3 times. The fourth time it was done has lasted for 5 years. His surgeon did a gastric emptying study and an upper GI to see how his stomach empties and how much motility he had in his esophagus before surgery. 's last nissen was done two time s the length as normal because he coughs so hard and he has very little motility in his esophagus and he is totally tube fed. For him the nissen is the only way to go without it he is failure to thrive. I would ask your surgeon about the tests I mentioned and see if they are appropiate for your little one. Good luck with your baby and if you have any other questions feel free to ask every one here is wonderful. Tell us a little more about yourself and your baby. a mom to 8yr CHARGEr and Quintin 5yr --- lesley947147 wrote: > Rather nervously this is my first time on the CHARGE > listserv. > Our baby is nine months old and had her > Fundoplication surgery in May > 05 which proved to be successful and allowed her to > start gaining > weight and keep her feed in but all of a sudden > recently she has > started to reflux almost back to how she was before > surgery. We have > re started her reflux drugs and obviously will be > seeing her > consultant next week for her review in the meantime > perhaps someone > out there could give me some advice. > Is this common or has her surgery failed or is this > type of surgery > one which requires constant monitoring? > I would really appreciate some feed back. > > Many thanks > Lesley mum to Amelie age 9 months > > > ______________________________________________________ Yahoo! for Good Watch the Hurricane Katrina Shelter From The Storm concert http://advision.webevents.yahoo.com/shelter Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2005 Report Share Posted September 12, 2005 Lesley, I am supposed to be taking a break for a while but just wanted to welcome you to the list. Simon and I have been part of this list for around 2 years and it has been invaluable. I hope you find answers to your questions and please ask as much as you like. Nothing is ever too small or too silly here. It's like having hundreds of experts at your disposal! Also looking forward to meeting you guys next week. Don't forget your swim gear for the hydro pool. (That goes for you too is). Flo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2005 Report Share Posted September 12, 2005 another lesly wow theres heaps of leslys in here hope i dont get you mixed up maybe ill call you ll as in london lol well welcome im Ellen from Australia an audult charger 20 im one of the failed ones with fundos kim mentioined well she knows that we are one of a number well ive only been hanging out on the list since november last year mum was here befor me and this list is the best thing in the world as flo said ntothings to big or silly or anything in here we all share each others joys and sorows:) well enough rambling about that i often ramble as many could tell you lol well of the charge letters ive3 got bilatral colibomas semicicular canals cleft lip and palate cyclical vomiting gastro tummy problems oesteoproosis among other things what parts of charge do you have where in london are you i guess you are there course florence and simon wrote that are you near them they are great assets to this place from ellen howe ferom aus where its spring adn the gras is dying and rain is needed england sendc us your rain with aussie cricket team lollol > > Lesley, > I am supposed to be taking a break for a while but just wanted to welcome > you to the list. Simon and I have been part of this list for around 2 > years > and it has been invaluable. I hope you find answers to your questions and > please ask as much as you like. Nothing is ever too small or too silly > here. It's like having hundreds of experts at your disposal! > > Also looking forward to meeting you guys next week. Don't forget your swim > gear for the hydro pool. (That goes for you too is). > > Flo > > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca, or > email info@.... > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org <http://www.chargesyndrome.org> or by calling > 1-. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2005 Report Share Posted September 12, 2005 > Rather nervously this is my first time on the CHARGE listserv. > Our baby is nine months old and had her Fundoplication surgery in May > 05 which proved to be successful and allowed her to start gaining > weight and keep her feed in but all of a sudden recently she has > started to reflux almost back to how she was before surgery. We have > re started her reflux drugs and obviously will be seeing her > consultant next week for her review in the meantime perhaps someone > out there could give me some advice. > Is this common or has her surgery failed or is this type of surgery > one which requires constant monitoring? > I would really appreciate some feed back. > > Many thanks > Lesley mum to Amelie age 9 months My Son had the same surgey when he was born and was fine for about 2 month and now he dose reflux and vommit up his food if we give him to much raymond herrick son cole 7month charge Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2005 Report Share Posted September 12, 2005 Lesley, Unfortunately, fundoplications are known to have a 30% failure rate; I'm hoping this isn't the case for Amelie...but I do know of several cases where the 2nd fundo was successful...good luck with everything. Great to finally see you on the listserv!!! Home: lisaweir@... Work: lisa.weir@... Phone: Web: http://ca.geocities.com/weirfamilyrogers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2005 Report Share Posted September 14, 2005 Thanks for the reminder Flo...! Lesley, I can't help with the Fundo question but look forward to meeting you at the UK Charge day. We are bringing our son is who is nearly 2 now. > > Lesley, > I am supposed to be taking a break for a while but just wanted to welcome > you to the list. Simon and I have been part of this list for around 2 > years > and it has been invaluable. I hope you find answers to your questions and > please ask as much as you like. Nothing is ever too small or too silly > here. It's like having hundreds of experts at your disposal! > > Also looking forward to meeting you guys next week. Don't forget your swim > gear for the hydro pool. (That goes for you too is). > > Flo > > > > > > Membership of this email support groups does not constitute membership in > the CHARGE Syndrome Foundation or CHARGE Syndrome Canada. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter), > please contact marion@... or visit > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada > information and membership, please visit http://www.chargesyndrome.ca, or > email info@.... > 8th International > CHARGE Syndrome Conference, July, 2007. Information will be available at > www.chargesyndrome.org <http://www.chargesyndrome.org> or by calling > 1-. > Quote Link to comment Share on other sites More sharing options...
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