Guest guest Posted November 4, 2006 Report Share Posted November 4, 2006 , My son had a TEF also. He was tube fed for 11 years. It took a very long time for him to develop the coordination he esophagus needed to keep his food down. The peristalsis was not what it should be. He is 23 and eats pretty much a regular diet but soft all his meat ect. is ground. His chewing skills are very weak. Sometimes it is a combination of many things to allow for a normal chew & swallow. We still have things that come back up but at least no tube. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2006 Report Share Posted November 4, 2006 Ellen, My Mark will NEVER eat normally. With all the work over the years OT, PT ect. It was decided that it would not be an option. He gets plenty to eat and is much healthier OFF the tube and eating a regular diet the way he is able to. I had to prove to his GI surgeons that I could maintain and keep him gaining before it was removed. Now he is actually a little on the heavy side which we thought we would never see. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2006 Report Share Posted November 4, 2006 Ellen, I agree with you on this one. I am also a GI nurse and have seen the tubes go in when I don't think they are needed also. It is a sensitive subject. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2006 Report Share Posted November 4, 2006 was admitted to Albany Med on Thursday night because the last couple weeks hes been chocking on his food{was eating table food} and coughing with his formula. The doctorPediatric surgery resident} ordered an upper gi for him they thought he had a narrowing in his esophigus where they did his T.E. Fistula repair they found nothing when they looked at the results i very frustrated because its another visit where we did not get the answer on what is wrong. has to go see the E.N.T on monday because he said that his tonsils are enlarged but he doesnt think that they would cause his eating problems. does not have a feeding tube to fall back on because he wasnt using it so surgery decided to take it out.He is now eating baby food{stage 2}until they can figure out whats wrong any input would help is now home he was realeased yesterday Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2006 Report Share Posted November 5, 2006 they shoulldnt take a tube otu till they r absolutely sure in my opion > > , > My son had a TEF also. He was tube fed for 11 years. It took a > very long time for him to develop the coordination he esophagus needed to > keep > his food down. The peristalsis was not what it should be. He is 23 and > eats > pretty much a regular diet but soft all his meat ect. is ground. His > chewing > skills are very weak. Sometimes it is a combination of many things to > allow for a > normal chew & swallow. We still have things that come back up but at least > no > tube. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2006 Report Share Posted November 5, 2006 ugh, your story brings back some very recent memories-- In August, Sammy was admitted to the hospital after several choking episodes while drinking formula and eating his regular foods (cereal & stage 2). He was there for a week and they found no reason for it. They did a swallow study, bronchoscopy, endoscopy w. 24-hr ph probe (reflux issues were already identified and this was in the plan eventually, so they did it then). Also a gastric emptying study. He developed croup after being in the hospital 2 days, and they kept testing him for RSV. They really wanted to blame the whole thing on a virus, but that was not the case. In the end, the best explanation was that the stuff coming up from the reflux, the mucus going down from his nose, and eating all just complicated the swallowing and he couldn't manage it all for that brief time. Since then, he's had maybe 2 or 3 isolated instances of choking, not as big a deal as the first time. All this in our boy who does NOT have TEF (but he does have a narrow trachea), and has never had much trouble swallowing... So I think I understand what you're going thru- it is so frustrating to feel like there is no answer. But in the end, our kids just figure out how to do it their own way and move on!! Good luck to you and , take care. Theresa > was admitted to Albany Med on Thursday night because the last > couple weeks hes been chocking on his food{was eating table food} and > coughing with his formula. The doctorPediatric surgery resident} > ordered an upper gi for him they thought he had a narrowing in his > esophigus where they did his T.E. Fistula repair they found nothing > when they looked at the results i very frustrated because its another > visit where we did not get the answer on what is wrong. has to > go see the E.N.T on monday because he said that his tonsils are > enlarged but he doesnt think that they would cause his eating > problems. does not have a feeding tube to fall back on because > he wasnt using it so surgery decided to take it out.He is now eating > baby food{stage 2}until they can figure out whats wrong any input > would help is now home he was realeased yesterday > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2006 Report Share Posted November 5, 2006 thats bout the same with me id never eat properly eather thats y im allwasy against the removal of tuves till they know that we dont need them ive been in hosp with people who have had them out then put back coz they needed them now if they kept them theyd of not needed the second op > > Ellen, > My Mark will NEVER eat normally. With all the work over the years > OT, PT ect. It was decided that it would not be an option. He gets plenty > to > eat and is much healthier OFF the tube and eating a regular diet the way > he is > able to. I had to prove to his GI surgeons that I could maintain and keep > him > gaining before it was removed. Now he is actually a little on the heavy > side > which we thought we would never see. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2006 Report Share Posted November 5, 2006 I hate to add to the confustion/frustration - but when gets a little off, like an oncoming ear infection or sinus infection she gets, what I call, sensitive. She will vomit/gag when she laughs or cries hard and when she is eating (which is very little - she is 99% tube fed). I don't know if it the mucus or the fact that her body is fighting something....... Lori Myers -------------- Original message -------------- ugh, your story brings back some very recent memories-- In August, Sammy was admitted to the hospital after several choking episodes while drinking formula and eating his regular foods (cereal & stage 2). He was there for a week and they found no reason for it. They did a swallow study, bronchoscopy, endoscopy w. 24-hr ph probe (reflux issues were already identified and this was in the plan eventually, so they did it then). Also a gastric emptying study. He developed croup after being in the hospital 2 days, and they kept testing him for RSV. They really wanted to blame the whole thing on a virus, but that was not the case. In the end, the best explanation was that the stuff coming up from the reflux, the mucus going down from his nose, and eating all just complicated the swallowing and he couldn't manage it all for that brief time. Since then, he's had maybe 2 or 3 isolated instances of choking, not as big a deal as the first time. All this in our boy who does NOT have TEF (but he does have a narrow trachea), and has never had much trouble swallowing... So I think I understand what you're going thru- it is so frustrating to feel like there is no answer. But in the end, our kids just figure out how to do it their own way and move on!! Good luck to you and , take care. Theresa > was admitted to Albany Med on Thursday night because the last > couple weeks hes been chocking on his food{was eating table food} and > coughing with his formula. The doctorPediatric surgery resident} > ordered an upper gi for him they thought he had a narrowing in his > esophigus where they did his T.E. Fistula repair they found nothing > when they looked at the results i very frustrated because its another > visit where we did not get the answer on what is wrong. has to > go see the E.N.T on monday because he said that his tonsils are > enlarged but he doesnt think that they would cause his eating > problems. does not have a feeding tube to fall back on because > he wasnt using it so surgery decided to take it out.He is now eating > baby food{stage 2}until they can figure out whats wrong any input > would help is now home he was realeased yesterday > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2006 Report Share Posted November 5, 2006 Interesting, Lori. Kendra, also, gags when coming down with a cold or ear infection. I assume she has mucus secretions and/or slight swelling of throat or nasal passages. When the cold has passed, she stops the gagging or vomiting. She has a fundoplication and didn't use to be able to vomit at all, but it has loosened a little bit in the last few years so sometimes she does vomit. The other time we see her gag or vomit, in addition to when coming down with something, is when she seems to be constipated. It seems everything is kind of slowed down and ultimately no more food seems to get down to her stomach. The times that the above happen are fairly infrequent, if not rare, now. Re: Very Frustrated I hate to add to the confustion/frustration - but when gets a little off, like an oncoming ear infection or sinus infection she gets, what I call, sensitive. She will vomit/gag when she laughs or cries hard and when she is eating (which is very little - she is 99% tube fed). I don't know if it the mucus or the fact that her body is fighting something....... Lori Myers -------------- Original message -------------- ugh, your story brings back some very recent memories-- In August, Sammy was admitted to the hospital after several choking episodes while drinking formula and eating his regular foods (cereal & stage 2). He was there for a week and they found no reason for it. They did a swallow study, bronchoscopy, endoscopy w. 24-hr ph probe (reflux issues were already identified and this was in the plan eventually, so they did it then). Also a gastric emptying study. He developed croup after being in the hospital 2 days, and they kept testing him for RSV. They really wanted to blame the whole thing on a virus, but that was not the case. In the end, the best explanation was that the stuff coming up from the reflux, the mucus going down from his nose, and eating all just complicated the swallowing and he couldn't manage it all for that brief time. Since then, he's had maybe 2 or 3 isolated instances of choking, not as big a deal as the first time. All this in our boy who does NOT have TEF (but he does have a narrow trachea), and has never had much trouble swallowing... So I think I understand what you're going thru- it is so frustrating to feel like there is no answer. But in the end, our kids just figure out how to do it their own way and move on!! Good luck to you and , take care. Theresa > was admitted to Albany Med on Thursday night because the last > couple weeks hes been chocking on his food{was eating table food} and > coughing with his formula. The doctorPediatric surgery resident} > ordered an upper gi for him they thought he had a narrowing in his > esophigus where they did his T.E. Fistula repair they found nothing > when they looked at the results i very frustrated because its another > visit where we did not get the answer on what is wrong. has to > go see the E.N.T on monday because he said that his tonsils are > enlarged but he doesnt think that they would cause his eating > problems. does not have a feeding tube to fall back on because > he wasnt using it so surgery decided to take it out.He is now eating > baby food{stage 2}until they can figure out whats wrong any input > would help is now home he was realeased yesterday > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2006 Report Share Posted November 5, 2006 Evan does the same thing. We can always tell when an ear infection is coming on, because putting in his hearing aides will start a gagging spell. (mom to Evan, 16 months) myerstl@... wrote: I hate to add to the confustion/frustration - but when gets a little off, like an oncoming ear infection or sinus infection she gets, what I call, sensitive. She will vomit/gag when she laughs or cries hard and when she is eating (which is very little - she is 99% tube fed). I don't know if it the mucus or the fact that her body is fighting something....... Lori Myers -------------- Original message -------------- ugh, your story brings back some very recent memories-- In August, Sammy was admitted to the hospital after several choking episodes while drinking formula and eating his regular foods (cereal & stage 2). He was there for a week and they found no reason for it. They did a swallow study, bronchoscopy, endoscopy w. 24-hr ph probe (reflux issues were already identified and this was in the plan eventually, so they did it then). Also a gastric emptying study. He developed croup after being in the hospital 2 days, and they kept testing him for RSV. They really wanted to blame the whole thing on a virus, but that was not the case. In the end, the best explanation was that the stuff coming up from the reflux, the mucus going down from his nose, and eating all just complicated the swallowing and he couldn't manage it all for that brief time. Since then, he's had maybe 2 or 3 isolated instances of choking, not as big a deal as the first time. All this in our boy who does NOT have TEF (but he does have a narrow trachea), and has never had much trouble swallowing... So I think I understand what you're going thru- it is so frustrating to feel like there is no answer. But in the end, our kids just figure out how to do it their own way and move on!! Good luck to you and , take care. Theresa > was admitted to Albany Med on Thursday night because the last > couple weeks hes been chocking on his food{was eating table food} and > coughing with his formula. The doctorPediatric surgery resident} > ordered an upper gi for him they thought he had a narrowing in his > esophigus where they did his T.E. Fistula repair they found nothing > when they looked at the results i very frustrated because its another > visit where we did not get the answer on what is wrong. has to > go see the E.N.T on monday because he said that his tonsils are > enlarged but he doesnt think that they would cause his eating > problems. does not have a feeding tube to fall back on because > he wasnt using it so surgery decided to take it out.He is now eating > baby food{stage 2}until they can figure out whats wrong any input > would help is now home he was realeased yesterday > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2006 Report Share Posted November 5, 2006 , I hope is feeling better. I wish I had known that was in Albany Med. My niece is there (has been since Monday) and I have been down a few times this week to see her. She is on the peds unit, and we dont' know when she'll be coming home. Good luck figuring this out. Kate (PT in NY) > > was admitted to Albany Med on Thursday night because the last > couple weeks hes been chocking on his food{was eating table food} and > coughing with his formula. The doctorPediatric surgery resident} > ordered an upper gi for him they thought he had a narrowing in his > esophigus where they did his T.E. Fistula repair they found nothing > when they looked at the results i very frustrated because its another > visit where we did not get the answer on what is wrong. has to > go see the E.N.T on monday because he said that his tonsils are > enlarged but he doesnt think that they would cause his eating > problems. does not have a feeding tube to fall back on because > he wasnt using it so surgery decided to take it out.He is now eating > baby food{stage 2}until they can figure out whats wrong any input > would help is now home he was realeased yesterday > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2006 Report Share Posted November 7, 2006 , Eva has a narrow airway also and she is 18 (almost 19 months old) and she is still on 2nd and 3rds baby food. Just hang in there and remember everything will be fine and he is here with you and loving you very much. You both have gotten threw so much this is just one small thing to get past. Hugs, Crystal mom to (10), (3) and Eva (18 month old CHARGEr) wife to Dan in illinois > > was admitted to Albany Med on Thursday night because the last > couple weeks hes been chocking on his food{was eating table food} and > coughing with his formula. The doctorPediatric surgery resident} > ordered an upper gi for him they thought he had a narrowing in his > esophigus where they did his T.E. Fistula repair they found nothing > when they looked at the results i very frustrated because its another > visit where we did not get the answer on what is wrong. has to > go see the E.N.T on monday because he said that his tonsils are > enlarged but he doesnt think that they would cause his eating > problems. does not have a feeding tube to fall back on because > he wasnt using it so surgery decided to take it out.He is now eating > baby food{stage 2}until they can figure out whats wrong any input > would help is now home he was realeased yesterday > Quote Link to comment Share on other sites More sharing options...
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