Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 rose, we use dr. bye Pulmonology at columbia and dr defleice GI, we used Dr keller ENT, but he was not helpful in getting erikas trahc out, to passive. Dr. Defleice is not so great either! Dr. Bye, is hot and cold. we switched ENTs to NYU. the others we still use, but am searching for drs that will take the time to help us. this list gve me a few other options to try. we tried switching GI's at COlumbia, but they would not let me stay int he group with a different dr. thanx for the info cathie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2004 Report Share Posted November 8, 2004 Marisa, thanx for the info, i will loook into Westchester, we actually used a t Urologist there, and loved him. cathie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 Hi Cathie, Ellens message jogged my memory too. Andy went through a terrible coughing spell for months....coughed until he vomited....I went to pulmonologists, allergists, you name it...until someone said, " go to a GI doc " . I thought they were nuts, what did the stomach have to do with coughing?. Well, as Ellen said below, his coughing was a result of reflux. He was put on Zantac and his coughing stopped immediately! What a relief for Andy, and finally, silence :-) Good luck in your search for a cause/cure! Sally (mom to Andy, 23) Message: 3 > Date: Mon, 08 Nov 2004 06:07:49 -0000 > > Subject: an idea for the respiraty issues > > > hi i just thought id put a couple of ideas in here as ive had similar > problems when i was little i used to have aspiration pnmonia you > might like to consider that adn also reflux but also i ws thi ging yu > c ould have sleep aponia as i had that cpap helped a great dealhope > this helps id say go to gp and get a god referal to a good peadatric > doctor who can check this out Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2004 Report Share Posted November 9, 2004 Hi and Sally, Ellen's message reminded me too. Has anyone thought about whooping cough? Ellen and I both caught it from her school and we coughed ourselves into vomiting for over 6 months. Ellen's Mum, Marea an idea for the respiraty issues > > > > > > hi i just thought id put a couple of ideas in here as ive had similar > > problems when i was little i used to have aspiration pnmonia you > > might like to consider that adn also reflux but also i ws thi ging yu > > c ould have sleep aponia as i had that cpap helped a great dealhope > > this helps id say go to gp and get a god referal to a good peadatric > > doctor who can check this out > > > > > 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 November 11, 2004 Report Share Posted November 11, 2004 we've had a hard time explaining " secretions " to our friends and family, too. in our case secretions just means lots and lots of mucus. the mucus is more of a problem for us because adele doesn't swallow very well. (i think that is the case for lots of kids.) the mucus is sometimes clear, sometimes yellow, but constantly coming out her nose and being coughed or sneezed up. sometimes it is thin and sometimes it is literally a glob. the globs can cause gagging/choking . . . and sometimes vomiting. robinul is the medicine used to " dry up " secretions but it is tricky b/c you don't want the secretions to get too thick to be managed. we do not go anywhere without a suction bulb and a " snot rag. " at home, we have a bulb in every room and suction machine that we use regularly. no matter how much we suction, her breathing is almost always rattley (her lungs are clear though). a trach has been mentioned several times, but in our case, the ENT's do not think it would help. from what i understand, the trach is suctioned just like the mouth and/or nose to clear the mucus. hope that makes sense. i am glad that josh doesn't have this problem. -- Mom to Adele (5 1/2 months) > > hi > i am ever curious and confused when it comes to people here talk about > secretions, tracts, suctioning etc ... Josh doesn't have a trac, so that > is probably why ... i was curious about reasons for needing one, and > what the problem is with secretions? > > i have noticed that Josh coughs whenever he has a burp - he has a > nissans and cannot burp through it, so once i vent his g-tube he stops > coughing. > > thanks for any info > Jo > > > > > Quote Link to comment Share on other sites More sharing options...
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