Guest guest Posted February 25, 2004 Report Share Posted February 25, 2004 Hi, I am the mother of 7 year old Landon who was also diagnosed with CHARGE Syndrome. It has been a couple of years since I have had a computer so needless to say I have not been able to post or check messages with the group. I remember some of you guys discussing issues about reflux, though. Landon has very severe reflux problems and nothing has helped. He is currently on Nexium twice a day, but no luck. Prilosec and Reglan didn't work either. Yesterday he had an endoscopy done, and the doctor said it was severe. He did biopsies and is suppose to call me tomorrow to discuss our options. I was wondering if you all had any suggestions? I feel like we may be looking at surgery, but I don't know that much about the type of surgery, effects, etc. Can anyone help me out with answers? Oh yeah, Landon eats a regular diet but vomits about 3 times per week to the point of retching. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2004 Report Share Posted February 25, 2004 Hi , Welcome back! I suspect that a fundoplication surgery may be suggested. This surgery is fairly common with children with CHARGE as it effectively closes off the sphincter to the stomach so that food can go down into the stomach but not back up. Of course, food that is already in the esophagus might reflux even with this procedure, especially if one is eating by mouth. You mention that Landon is eating a regular diet. Is he eating that all by mouth and not by gastrostomy tube? If he doesn't have a g-tube, it's possible that would be recommended along with the fundoplication. Has Landon had swallow therapy from a trained feeding therapist? Also, is there any chance you feel he may be having some kind of intolerance to the food he is eatng causing the vomiting? I ask because my daughter was even unable to tolerate breast milk without serious reactions, so food intolerance or allergy may be something to consider. The biggest culprits could be milk or soy or wheat products, but there could be any number of foods that are harder for some kids to digest. Best wishes, and let us know what the doctor says tomorrow. Mom to Kendra, and Camille RE: Reflux Issues Hi, I am the mother of 7 year old Landon who was also diagnosed with CHARGE Syndrome. It has been a couple of years since I have had a computer so needless to say I have not been able to post or check messages with the group. I remember some of you guys discussing issues about reflux, though. Landon has very severe reflux problems and nothing has helped. He is currently on Nexium twice a day, but no luck. Prilosec and Reglan didn't work either. Yesterday he had an endoscopy done, and the doctor said it was severe. He did biopsies and is suppose to call me tomorrow to discuss our options. I was wondering if you all had any suggestions? I feel like we may be looking at surgery, but I don't know that much about the type of surgery, effects, etc. Can anyone help me out with answers? Oh yeah, Landon eats a regular diet but vomits about 3 times per week to the point of retching. Thanks! Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter) please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org 7th International CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2004 Report Share Posted February 25, 2004 Hi , My son ph is still having a problem with reflux. He had his gallbladder out in December, and because of the problems with it, he had vomited so much he also now has a hiatal hernia. The surgeon said the hiatal hernia could be repaired laproscopically, and it would take care of the reflux at the same time. They basically wrap the stomach around the esophagus somehow and as it heals, the scar tissue actually makes it stronger and helps. I am debating on this. also is on Reglan, and now Nexium. There was no biopsy taken when his endoscopy was done. His gallbladder was his major problem at the time. He had vomited for a month before I had to raise hell over and over to get him in the hospital. He is doing well now, and has put the 20 pounds back on that he lost. eats regular food too, and sometimes gags and he vomited a couple of times the other day. First time he had vomited since his hospital stay. I would say to have your doctor refer you to a trusted pediatric surgeon who is trained and skilled at this type of surgery and can do it laproscopically. Less trauma, shorter hospital stay. Good luck and keep us posted. Mom to ph 21 year old cHaRGE'r Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2004 Report Share Posted February 25, 2004 , that is amazing that Landon has CHARGE and is able to eat a regular diet! That is such a blessing. Whitney has severe reflux, and had to have the fundoplycation surgery that so many others with CHARGE syndrome have had. For her it was a huge help and turning point for her. It will be interesting to hear what other options your Doctor may suggest. Whitney goes through stages of vomiting with wrenching as well, but because she has a G-tube, it just goes into there. Last month there was talk on this sight about how a lot of these kids get migraine head aches that cause the vomiting. I believe that is what is happening with Whitney, like when she gets a cold, or isn't feeling well for any reason, she vomits more often. She kind of rubs her head and moans and then vomits. Tylenol has helped her. I of course don't know if this is what is causing Landon to vomit, but it's something to think about. I hope this helps. Good luck. DeAnn, Mom to Austin 8, 5, and CHARgE Whitney 7 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2004 Report Share Posted February 25, 2004 wesley had a Nissan (sp?) done when he was two. they just took part of the stomach and pulled it up making a collar around the valve on his stomach so it is now a one way valve. things can go down but not up. this also means he can not burp. so no gum or Pop. his dad drinks pop a lot so Dad also shakes and stirs pop for wes tell the bubbles are out if he asks for some. Wesley also had a G tube put in at the same time for eating but he doesn't use it anymore. He wants the G tube out but I am afraid because we still end up venting him sometimes. but not nearly as often as we use to. we had the chance when wes was young to talk to a grown man who had had a Nissan done when young . he said it has helped him a lot but when he gets the flu he has to go in the hospital because he cant throw up and it makes him hurt really bad. I think we will be looking at closing the g tube soon because last time the dr said she would do it if wes and us wanted. wes wanted I was not sure. but wes asks more often now to have it gone so we may have to give in and find something else to help his tummy when the gas gets too much for him. If anyone else has experience of Nissan with out G tube please let us know how you handle that. KayRena mom of wesley 10 charger Jake 8 Tristen 6 Zach 3 and KayLeigh not yet born. nstone32002 wrote: > Hi, > I am the mother of 7 year old Landon who was also diagnosed with > CHARGE Syndrome. It has been a couple of years since I have had a > computer so needless to say I have not been able to post or check > messages with the group. I remember some of you guys discussing > issues about reflux, though. Landon has very severe reflux problems > and nothing has helped. He is currently on Nexium twice a day, but > no luck. Prilosec and Reglan didn't work either. Yesterday he had > an endoscopy done, and the doctor said it was severe. He did > biopsies and is suppose to call me tomorrow to discuss our options. > I was wondering if you all had any suggestions? I feel like we may > be looking at surgery, but I don't know that much about the type of > surgery, effects, etc. Can anyone help me out with answers? Oh > yeah, Landon eats a regular diet but vomits about 3 times per week to > the point of retching. > Thanks! > > > > Membership of this email support groups does not constitute membership in the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you may contact CHARGE Syndrome Canada at 1- (families), visit www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2004 Report Share Posted February 25, 2004 I have CHARGE and I eat regularly too. Chantelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2004 Report Share Posted February 25, 2004 Chantelle, I'm so glad to hear that. I most often hear of those that can't eat. That gives me hope that all of the many hours spent on oral feeding therapy will not be wasted. We will see. DeAnn, Mom to Austin 8, 5, and CHARgE Whitney 7 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2004 Report Share Posted February 25, 2004 Chantelle, I'm so glad to hear that. I most often hear of those that can't eat. That gives me hope that all of the many hours spent on oral feeding therapy will not be wasted. We will see. DeAnn, Mom to Austin 8, 5, and CHARgE Whitney 7 months Quote Link to comment Share on other sites More sharing options...
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