Guest guest Posted June 26, 2004 Report Share Posted June 26, 2004 need some help I don't post often but I'm needing some help. My daughter (7 yrs unspecified mito) all of a sudden 3 weeks ago started saying she was choking and having trouble swallowing. After a hospitalization and an EDG the GI doc said she has esoniphilic esophagitis due to an allergy. They put her on prednisone but she is still having trouble. She will not eat she screams because it hurts. She has lost weight and has no energy. I called Cohen's office but he is out of town till July 7. I'm just wondering if there is something more going on. Does anyone have any idea what this could be? I can't stand to see her in pain all the time and getting skinnier. I don't know what to do. Thanks Shari _____________________________________________________________ ________________________________________________________________________ Please contact mito-owner with any problems or questions. ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2004 Report Share Posted June 29, 2004 Shari - Have you taken anything out of her diet since her endoscopy? Maybe her allergy is due to milk, soy or the glutens - lots of kids have problems with these. If it is one, the symptoms should improve when you stop the offending food. Is she scheduled for a food allergy evaluation? There are serum RAST tests looking for IgE to foods, and also food panels looking for IgG. Your pediatrician could run those. Alternatively, you could do a trial off those foods and see if she improves. If she is in pain, maybe it's due to acid reflux (and Prednisone will make this worse). Is she on any H2 antagonists (like Zantac) or even an antacid? My middle child once had Candida (yeast) esophagitis, and she was more miserable and in more pain than she ever was before or since (even more than her hip fractures, or post-op). It's supposed to feel like a burning rake down your esophagus. Were cultures done during her endoscopy? Prednisone will also make this worse. If she won't eat, will she drink a smoothie? You can make them with protein powder (to increase calories), fresh/frozen fruit, juice, yoghurt - if it's cold, it might feel good going down, and encourage her to drink it. Good luck! I was frantic when had a similar problem. I hope that she gets better soon. Kathy need some help -----Original Message-----From: Shari Chapman Sent: Saturday, June 26, 2004 8:11 AMTo: Mito Subject: need some helpI don't post often but I'm needing some help. My daughter (7 yrsunspecified mito) all of a sudden 3 weeks ago started saying she was chokingand having trouble swallowing. After a hospitalization and an EDG the GIdoc said she has esoniphilic esophagitis due to an allergy. They put her onprednisone but she is still having trouble. She will not eat she screamsbecause it hurts. She has lost weight and has no energy. I called Cohen'soffice but he is out of town till July 7. I'm just wondering if there issomething more going on. Does anyone have any idea what this could be? Ican't stand to see her in pain all the time and getting skinnier. I don'tknow what to do.ThanksShari_____________________________________________________________________________________________________________________________________Please contact mito-owner with any problems or questions.------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2004 Report Share Posted November 18, 2004 How encouraging of the gentleman. I believe I might consider consulting another ortho who said something more along the lines of " Gee. This isn't going to be easy, but we can help you. " At the least, he might have told you WHY you're such a tough case. And I think I'd have said something along the lines of " Maybe I need to find another ortho who has more experience with cases like mine. Can you suggest anybody? " As for things changing in process ... yes, indeed. That's possible. I've known people who left the decision for genio up to the surgeon. I was told lower from the beginning, and then toward the surgery, my ortho started making noises about upper as well, to the point that just before the surgery, I asked my OS whether he needed to do that, too. He said absolutely not, and that he would not, because I would not get sufficient benefit from it. Treatment times can also vary wildly from the predictions, as I reckon you've seen -- although mine was exactly on the money. I am absolutely certain that my ortho had prepared a treatment plan, because I asked one of his assistants about something, not too long after we started, and she looked it up in my chart. But he didn't really ever sit me down and explain it. If I were doing it over again, I'd have asked him for more details at the preliminary meeting we had after he'd done the x-rays and drawings. He just showed me the drawings and the angles, kinda shrugged, and said, " Well, you see, everything is just way off. " I trusted him, and that turned out not to be a mistake. But I'd like to have known more, in retrospect. I did know that he is very, very good at what he does, and that he's had years of experience in working with a variety of problems. Almost everyone I've encountered who had ortho work done in our little community, had it from him. Some 30 years ago, some last year. And nobody had an unkind or uncomplimentary thing to say about him. Could you ask your surgeon, if you know he/she is the one you want, for a referral to another ortho for a second opinion? And be of good cheer. As I said, I'm no pro -- but I'd wager that there are many people out there who have problems as troubling or moreso than yours. Consider that there are children who are born with hardly any lower jaw at all, for example, and other craniofacial anomalies. they, too, can be treated. And sometimes we just have personality clashes with specific people. That may be part of the trouble here... Best, Cammie > > > I had a appointment with my OD today. I left depressed and frusrated > again. He told me that I have the worse case he has ever seen and > that he dosnt know wether my speach would be improved with surgery. > Did you guys have a treatment plan before you put braces on? The OS > and OD want me to go ahead and put the braces on, I asked them what > kind of surgery I would need; upper, lower or a combo. They told me > they dont know that it could change during my orthodontic treatment. > It seems to me every hard question I have about how i would look or > exact problem and treatment i get a, I dont know it could change. Is > this normal isnt there supposed to be a treament plan or am I being > to picking. I could use any advice or a recommandation to an OS in > the Northern VA, DC area. > > Thanks > Mahdee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2004 Report Share Posted November 18, 2004 How encouraging of the gentleman. I believe I might consider consulting another ortho who said something more along the lines of " Gee. This isn't going to be easy, but we can help you. " At the least, he might have told you WHY you're such a tough case. And I think I'd have said something along the lines of " Maybe I need to find another ortho who has more experience with cases like mine. Can you suggest anybody? " As for things changing in process ... yes, indeed. That's possible. I've known people who left the decision for genio up to the surgeon. I was told lower from the beginning, and then toward the surgery, my ortho started making noises about upper as well, to the point that just before the surgery, I asked my OS whether he needed to do that, too. He said absolutely not, and that he would not, because I would not get sufficient benefit from it. Treatment times can also vary wildly from the predictions, as I reckon you've seen -- although mine was exactly on the money. I am absolutely certain that my ortho had prepared a treatment plan, because I asked one of his assistants about something, not too long after we started, and she looked it up in my chart. But he didn't really ever sit me down and explain it. If I were doing it over again, I'd have asked him for more details at the preliminary meeting we had after he'd done the x-rays and drawings. He just showed me the drawings and the angles, kinda shrugged, and said, " Well, you see, everything is just way off. " I trusted him, and that turned out not to be a mistake. But I'd like to have known more, in retrospect. I did know that he is very, very good at what he does, and that he's had years of experience in working with a variety of problems. Almost everyone I've encountered who had ortho work done in our little community, had it from him. Some 30 years ago, some last year. And nobody had an unkind or uncomplimentary thing to say about him. Could you ask your surgeon, if you know he/she is the one you want, for a referral to another ortho for a second opinion? And be of good cheer. As I said, I'm no pro -- but I'd wager that there are many people out there who have problems as troubling or moreso than yours. Consider that there are children who are born with hardly any lower jaw at all, for example, and other craniofacial anomalies. they, too, can be treated. And sometimes we just have personality clashes with specific people. That may be part of the trouble here... Best, Cammie > > > I had a appointment with my OD today. I left depressed and frusrated > again. He told me that I have the worse case he has ever seen and > that he dosnt know wether my speach would be improved with surgery. > Did you guys have a treatment plan before you put braces on? The OS > and OD want me to go ahead and put the braces on, I asked them what > kind of surgery I would need; upper, lower or a combo. They told me > they dont know that it could change during my orthodontic treatment. > It seems to me every hard question I have about how i would look or > exact problem and treatment i get a, I dont know it could change. Is > this normal isnt there supposed to be a treament plan or am I being > to picking. I could use any advice or a recommandation to an OS in > the Northern VA, DC area. > > Thanks > Mahdee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2004 Report Share Posted November 18, 2004 Mahdee I live in arizona but i have talked via e mail with Dr. Niamtu in virginia he allways responds and he seems very credible. he has website called oralfacialsurgery.com Hope this helps happy holidays Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 18, 2004 Report Share Posted November 18, 2004 Mahdee I live in arizona but i have talked via e mail with Dr. Niamtu in virginia he allways responds and he seems very credible. he has website called oralfacialsurgery.com Hope this helps happy holidays Quote Link to comment Share on other sites More sharing options...
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