Guest guest Posted December 10, 1999 Report Share Posted December 10, 1999 Since I have been on this list I seem to have seen three patterns of EG, EE, development. There seem to be those who develop it as infants, then there appear to be some in who it starts about age 10, and then there are those who develop it as adults. There may be other patterns of development, but those are the ones I have recognized from my reading here. I know that there are three different layers involved in the stomach and intestine and these may present a little differently also. However it seems that most here don't know which layer is involved. It may not be that significant in the treatment of the disease. But I wonder if it could be significant in who outgrows it and who doesn't? With so many variables, and so little knowledge about this disease, I think it is a guessing game. Wish they would do some more research on us to try and determine what causes it and why...... And some long term studies about how it affects us over the long term and if children do outgrow maybe one form over another. I think some of the problem here is the fact that it is an Allergic disease with GI symptoms. We need a team who will research together............... I know Joy is interested in compiling a list of Doctors who specialize in EE, EG and posting it on her web site. I hope you will send her the information so she can contact them for permission, or ask them to contact her. I think that would be helpful to all of us. It would be nice to find some West coast doctors and some who treat Adults as well. JUDY (ADULT GE) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 1999 Report Share Posted December 10, 1999 Dan problems started at age 14. sjh wrote: > With us, we all had it from birth, problems could be traced way back > to baby-dom, though some were much more severe than others. S. > > [eosinophilic gastroenteritis] Who Outgrows it????? > Since I have been on this list I seem to have seen three > patterns of EG, EE, > development. There seem to be those who develop it as > infants, then there > appear to be some in who it starts about age 10, and then > there are those > who develop it as adults. There may be other patterns of > development, but > those are the ones I have recognized from my reading here. > > I know that there are three different layers involved in the > stomach and > intestine and these may present a little differently also. > However it seems > that most here don't know which layer is involved. It may > not be that > significant in the treatment of the disease. But I wonder > if it could be > significant in who outgrows it and who doesn't? > > With so many variables, and so little knowledge about this > disease, I think > it is a guessing game. Wish they would do some more > research on us to try > and determine what causes it and why...... And some long > term studies about > how it affects us over the long term and if children do > outgrow maybe one > form over another. I think some of the problem here is the > fact that it is > an Allergic disease with GI symptoms. We need a team who > will research > together............... > > I know Joy is interested in compiling a list of Doctors who > specialize in > EE, EG and posting it on her web site. I hope you will send > her the > information so she can contact them for permission, or ask > them to contact > her. I think that would be helpful to all of us. It would > be nice to find > some West coast doctors and some who treat Adults as well. > > JUDY (ADULT GE) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 1999 Report Share Posted December 10, 1999 I wonder if that is true also for the ones who seemed to develop it as children. And what do you think about the rest of us who seemed to develop it as adults??? So many questions?? Judy Re: [eosinophilic gastroenteritis] Who Outgrows it????? With us, we all had it from birth, problems could be traced way back to baby-dom, though some were much more severe than others. S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 1999 Report Share Posted December 10, 1999 Sorry Also wanted to mention that he NEVER had a surgical procedure prior to having this problem. But he could have contracted the allergy from going to the dentist religously 2X a year from a baby and also from the food industry. Just a thought. sjh wrote: > With us, we all had it from birth, problems could be traced way back > to baby-dom, though some were much more severe than others. S. > > [eosinophilic gastroenteritis] Who Outgrows it????? > Since I have been on this list I seem to have seen three > patterns of EG, EE, > development. There seem to be those who develop it as > infants, then there > appear to be some in who it starts about age 10, and then > there are those > who develop it as adults. There may be other patterns of > development, but > those are the ones I have recognized from my reading here. > > I know that there are three different layers involved in the > stomach and > intestine and these may present a little differently also. > However it seems > that most here don't know which layer is involved. It may > not be that > significant in the treatment of the disease. But I wonder > if it could be > significant in who outgrows it and who doesn't? > > With so many variables, and so little knowledge about this > disease, I think > it is a guessing game. Wish they would do some more > research on us to try > and determine what causes it and why...... And some long > term studies about > how it affects us over the long term and if children do > outgrow maybe one > form over another. I think some of the problem here is the > fact that it is > an Allergic disease with GI symptoms. We need a team who > will research > together............... > > I know Joy is interested in compiling a list of Doctors who > specialize in > EE, EG and posting it on her web site. I hope you will send > her the > information so she can contact them for permission, or ask > them to contact > her. I think that would be helpful to all of us. It would > be nice to find > some West coast doctors and some who treat Adults as well. > > JUDY (ADULT GE) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 1999 Report Share Posted December 10, 1999 , I am no expert by any means, but it sure sounds to me like you may be on to something. I hope you will follow through. I also was wondering if Dan has talked to . She is away from home at college and so may have some tips for him in living away with this disease. Judy [eosinophilic gastroenteritis] Who Outgrows it????? Since I have been on this list I seem to have seen three patterns of EG, EE, development. There seem to be those who develop it as infants, then there appear to be some in who it starts about age 10, and then there are those who develop it as adults. There may be other patterns of development, but those are the ones I have recognized from my reading here. I know that there are three different layers involved in the stomach and intestine and these may present a little differently also. However it seems that most here don't know which layer is involved. It may not be that significant in the treatment of the disease. But I wonder if it could be significant in who outgrows it and who doesn't? With so many variables, and so little knowledge about this disease, I think it is a guessing game. Wish they would do some more research on us to try and determine what causes it and why...... And some long term studies about how it affects us over the long term and if children do outgrow maybe one form over another. I think some of the problem here is the fact that it is an Allergic disease with GI symptoms. We need a team who will research together............... I know Joy is interested in compiling a list of Doctors who specialize in EE, EG and posting it on her web site. I hope you will send her the information so she can contact them for permission, or ask them to contact her. I think that would be helpful to all of us. It would be nice to find some West coast doctors and some who treat Adults as well. JUDY (ADULT GE) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 1999 Report Share Posted December 10, 1999 Hey........ What about EC (Eosinophilic Colitis)???? Of course Spencer has them all. But don't forget about that one. It is his major effected area. I disagree to a point that it is just an allergy disease. It was explained to me at Children's hospital of Pittsburgh very simply put. If the source of the allergen (food) significantly reduces the Eos's in the gut when put on different types of elemental formula then it is looked at as an allergen triggered disease. But in Spencer's case....nothing would take away the Eos's in his Colon except steroids as well as nothing but Vivonex, and still we are fighting a battle. Now he is receiving nothing by gut.....(which is not the best) and he still has eos's in his Colon. He has been on an absolutely huge amount of steroids via IV and via the gut for 1 1/2 years now. And I am not talking about the standard 1-2 mg per Kilo. He is at least getting double that or more. So basically what I am saying is........it is an internal reaction to allergies but not always. It CAN just be where allergens are not the source of the disease.....in extreme cases such as Kody, Spencer and they have to rely on IV nutrients to survive. I also wish that they would do more research on this disease b/c it is so unclear, but if you really look at it (as sad as it is) there are not enough of us out here that have the disease for them to warrant doing tons of research which is solely based on MONEY! Sometimes, actually.....I hate money! Some might disagree with me on this, but this is what I have learned, but of course I am always open to ANYTHING AT THIS POINT! Because my child is eventually going to need a transplant of his liver b/c of his extreme case of this disease. Sometimes I just cry when some talk about having to cut back a few foods out of the diet, when I just wish my child would drink water. BUT, I do know that where ever you are at in this disease it is still very hard to deal with no matter what you are facing. Another way explained, when I see my sister's very chubby 2 year old downing food (but does have allergy restrictions).....it makes me very sad. I have gotten quite used to it, and I am not discounting how hard it is with a child who has eaten anything they have wanted and now have to go down to just a few foods.....it is, I am positive very hard on the child. I just wish it could be that way for us. Well, my response has now turned into a pity party. I'm sorry, every once in a while I just have to vent it all out to people that can understand. Love, [eosinophilic gastroenteritis] Who Outgrows it????? > > > Since I have been on this list I seem to have seen three patterns of EG, EE, > development. There seem to be those who develop it as infants, then there > appear to be some in who it starts about age 10, and then there are those > who develop it as adults. There may be other patterns of development, but > those are the ones I have recognized from my reading here. > > I know that there are three different layers involved in the stomach and > intestine and these may present a little differently also. However it seems > that most here don't know which layer is involved. It may not be that > significant in the treatment of the disease. But I wonder if it could be > significant in who outgrows it and who doesn't? > > With so many variables, and so little knowledge about this disease, I think > it is a guessing game. Wish they would do some more research on us to try > and determine what causes it and why...... And some long term studies about > how it affects us over the long term and if children do outgrow maybe one > form over another. I think some of the problem here is the fact that it is > an Allergic disease with GI symptoms. We need a team who will research > together............... > > I know Joy is interested in compiling a list of Doctors who specialize in > EE, EG and posting it on her web site. I hope you will send her the > information so she can contact them for permission, or ask them to contact > her. I think that would be helpful to all of us. It would be nice to find > some West coast doctors and some who treat Adults as well. > > JUDY (ADULT GE) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 1999 Report Share Posted December 10, 1999 , I wonder if he had it, but it was in remission or not severe enough to even see a reaction to the disease? Just an idea... [eosinophilic gastroenteritis] Who Outgrows it????? Since I have been on this list I seem to have seen three patterns of EG, EE, development. There seem to be those who develop it as infants, then there appear to be some in who it starts about age 10, and then there are those who develop it as adults. There may be other patterns of development, but those are the ones I have recognized from my reading here. I know that there are three different layers involved in the stomach and intestine and these may present a little differently also. However it seems that most here don't know which layer is involved. It may not be that significant in the treatment of the disease. But I wonder if it could be significant in who outgrows it and who doesn't? With so many variables, and so little knowledge about this disease, I think it is a guessing game. Wish they would do some more research on us to try and determine what causes it and why...... And some long term studies about how it affects us over the long term and if children do outgrow maybe one form over another. I think some of the problem here is the fact that it is an Allergic disease with GI symptoms. We need a team who will research together............... I know Joy is interested in compiling a list of Doctors who specialize in EE, EG and posting it on her web site. I hope you will send her the information so she can contact them for permission, or ask them to contact her. I think that would be helpful to all of us. It would be nice to find some West coast doctors and some who treat Adults as well. JUDY (ADULT GE) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 1999 Report Share Posted December 10, 1999 Judy, we were told this by our GI docs too(that some develop it in infancy, some in their teens, and some in adults). I asked the GI if anyone who had it in infancy and " outgrew " it, got it in their teens or adulthood. He said there aren't enough studies to know that. It would be nice to know what is ahead for BJ. Dawn-KS, mommy to Dakota, 7, aka BJ, 4, (eosinophilic gastroenteritis, Nissen, asthma, reflux), and mommy to Mackenzie Marie andrya born 11/20/99 [eosinophilic gastroenteritis] Who Outgrows it????? > > > Since I have been on this list I seem to have seen three patterns of EG, EE, > development. There seem to be those who develop it as infants, then there > appear to be some in who it starts about age 10, and then there are those > who develop it as adults. There may be other patterns of development, but > those are the ones I have recognized from my reading here. > > I know that there are three different layers involved in the stomach and > intestine and these may present a little differently also. However it seems > that most here don't know which layer is involved. It may not be that > significant in the treatment of the disease. But I wonder if it could be > significant in who outgrows it and who doesn't? > > With so many variables, and so little knowledge about this disease, I think > it is a guessing game. Wish they would do some more research on us to try > and determine what causes it and why...... And some long term studies about > how it affects us over the long term and if children do outgrow maybe one > form over another. I think some of the problem here is the fact that it is > an Allergic disease with GI symptoms. We need a team who will research > together............... > > I know Joy is interested in compiling a list of Doctors who specialize in > EE, EG and posting it on her web site. I hope you will send her the > information so she can contact them for permission, or ask them to contact > her. I think that would be helpful to all of us. It would be nice to find > some West coast doctors and some who treat Adults as well. > > JUDY (ADULT GE) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 1999 Report Share Posted December 10, 1999 Hey Steph, I was reading your thought's!!!! I just wrote that in an email before I got down to your email. LOL Re: [eosinophilic gastroenteritis] Who Outgrows it????? With us, we all had it from birth, problems could be traced way back to baby-dom, though some were much more severe than others. S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 1999 Report Share Posted December 10, 1999 That is a good probability, The thing that might not hold up there is that it is so rare and that other than you guys I have not heard of it running in families. But then with such varied symptoms I wonder if people live their whole lives with it and it only causes minor irritation for them and not severe pain like it has in us. I guess another possibility is that as in Cystic Fibrosis, both parents have to be carriers. There has been a history in my family for years of stomach problems, but mostly ulcers and Gerd. But what if some of those were misdiagnosed. I remember a few months back that we were hearing from a lot of Moms who were having symptoms, I wonder if any of them have followed up? I also wonder if I could have had this but just not had the major exacerbation's before. I am really wondering about the Latex thing. Can you be allergic to it internally and not have external symptoms??? Judy Re: [eosinophilic gastroenteritis] Who Outgrows it????? With us, we all had it from birth, problems could be traced way back to baby-dom, though some were much more severe than others. S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 1999 Report Share Posted December 10, 1999 Judy, The answer to your last question is YES! Spencer does. When he is exposed to Latex (b/c of stupid nurses or doc's) his symptoms become worse. Re: [eosinophilic gastroenteritis] Who Outgrows it????? With us, we all had it from birth, problems could be traced way back to baby-dom, though some were much more severe than others. S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 1999 Report Share Posted December 10, 1999 Judy was wondering how some of us moms that were having problems with our GI were doing. I am currently taking 80 mgs of Prilocec, but it is only half of the treatment. I am glad that I don't have to take steroids. But I am still yet to be biopsied. Ohhhh, can't wait! Re: [eosinophilic gastroenteritis] Who Outgrows it????? With us, we all had it from birth, problems could be traced way back to baby-dom, though some were much more severe than others. S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 1999 Report Share Posted December 10, 1999 In a message dated 12/10/99 4:44:10 PM Eastern Standard Time, stephy8ch@... writes: << Yes, it is sad about Brayden...he has a lot of other issues to deal with, I think he is multi-handicapped right? >> BTW - are you talking about Jayna's son? If so how is he doing? Have not heard from her in a while? Love, Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 1999 Report Share Posted December 10, 1999 In a message dated 12/10/99 7:17:52 PM Eastern Standard Time, andrea.allred@... writes: << w months ago when I brought him to the hospital and he was at 16!!! SCARY! Metabolic and Hirchprungs is still running through everyone's heads as well!!! They don't want to test for Hirschprungs until they can get his underlying disorder under control. Figure that one out......we have been trying for 1 1/2 years. >> Clayton was also thought to have hisrshprungs - even had a barium enema and rectal biopsy - negative BUT he does have a diagnosed metabolic disorder - mitochondrial disorder. Luckily after 2+ years we got a main diagnosis - his EG is secondary problem Love, sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 1999 Report Share Posted December 10, 1999 In a message dated 12/10/99 7:17:52 PM Eastern Standard Time, andrea.allred@... writes: << w months ago when I brought him to the hospital and he was at 16!!! SCARY! Metabolic and Hirchprungs is still running through everyone's heads as well!!! They don't want to test for Hirschprungs until they can get his underlying disorder under control. Figure that one out......we have been trying for 1 1/2 years. >> Alo, I forgot - Clayton cannot poop without medication. The carnitor which he takes for metabolic reasons helps his motility but he still needs to take mineral oil 3 times a day or he does not poop. Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 1999 Report Share Posted December 10, 1999 Steph, Now, now, now there.............you know that I know that you know that I know where YOU are coming from. (ohhhh that sounds even stranger) Dr. Putnam and Dr. Di Lorenzo have both said that they would transplant if needs be. Spencer's Colon would definitely be much better even if the allergen eos's are triggered. Which really sounds stupid, but I don't know how else to put it b/c Eos's are a form of allergens. I will have to re-ask Dr. Putnam about the two forms and their different names. But I have been assured that they would put him on the list. DON'T SCARE ME LIKE THIS!!!!! I don't want to loose my baby. What exactly is Kody diagnosed with.....Spencer has six diseases, they think that the other 5 were all brought on by the severity of his Eos's disease. BTW, isn't it so sad about Brayden. I feel helpless, but at least we both gave her some good info on Dr. Di Lorenzo. [eosinophilic gastroenteritis] Who Outgrows it????? > > > Since I have been on this list I seem to have seen three patterns of EG, EE, > development. There seem to be those who develop it as infants, then there > appear to be some in who it starts about age 10, and then there are those > who develop it as adults. There may be other patterns of development, but > those are the ones I have recognized from my reading here. > > I know that there are three different layers involved in the stomach and > intestine and these may present a little differently also. However it seems > that most here don't know which layer is involved. It may not be that > significant in the treatment of the disease. But I wonder if it could be > significant in who outgrows it and who doesn't? > > With so many variables, and so little knowledge about this disease, I think > it is a guessing game. Wish they would do some more research on us to try > and determine what causes it and why...... And some long term studies about > how it affects us over the long term and if children do outgrow maybe one > form over another. I think some of the problem here is the fact that it is > an Allergic disease with GI symptoms. We need a team who will research > together............... > > I know Joy is interested in compiling a list of Doctors who specialize in > EE, EG and posting it on her web site. I hope you will send her the > information so she can contact them for permission, or ask them to contact > her. I think that would be helpful to all of us. It would be nice to find > some West coast doctors and some who treat Adults as well. > > JUDY (ADULT GE) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 1999 Report Share Posted December 10, 1999 Judy, I don't know about your last question, but yes.....Spencer reacts only internally to latex. Re: [eosinophilic gastroenteritis] Who Outgrows it????? Judy, The answer to your last question is YES! Spencer does. When he is exposed to Latex (b/c of stupid nurses or doc's) his symptoms become worse. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 1999 Report Share Posted December 10, 1999 .. . Not sure I understand you answer? My Question " I am really wondering about the Latex thing. Can you be allergic to it internally and not have external symptoms??? " Your answer " The answer to your last question is YES! Spencer does. When he is exposed to Latex (b/c of stupid nurses or doc's) his symptoms become worse. " Does this mean that he has no external symptoms like Sharon said Clayton had redness and swelling on his leg from being touched? And the only manifestation is internal? Does anyone know if Latex and Noeprene are related chemically? Judy Re: [eosinophilic gastroenteritis] Who Outgrows it????? Judy, The answer to your last question is YES! Spencer does. When he is exposed to Latex (b/c of stupid nurses or doc's) his symptoms become worse. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 1999 Report Share Posted December 10, 1999 Thanks, I wonder just what part that may play for a lot of us. Think I will ask for the test myself. Judy Re: [eosinophilic gastroenteritis] Who Outgrows it????? Judy, The answer to your last question is YES! Spencer does. When he is exposed to Latex (b/c of stupid nurses or doc's) his symptoms become worse. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 1999 Report Share Posted December 10, 1999 was discovered at age 11, but he may have had it longer. Cathy mom to 12, AS, EE, allergic to soy, nuts, peanuts, tomato, rice, carrot, string bean, kidney bean, orange, pear, onion, mustard seed, grape Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 1999 Report Share Posted December 10, 1999 With us, we all had it from birth, problems could be traced way back to baby-dom, though some were much more severe than others. S. [eosinophilic gastroenteritis] Who Outgrows it????? Since I have been on this list I seem to have seen three patterns of EG, EE, development. There seem to be those who develop it as infants, then there appear to be some in who it starts about age 10, and then there are those who develop it as adults. There may be other patterns of development, but those are the ones I have recognized from my reading here. I know that there are three different layers involved in the stomach and intestine and these may present a little differently also. However it seems that most here don't know which layer is involved. It may not be that significant in the treatment of the disease. But I wonder if it could be significant in who outgrows it and who doesn't? With so many variables, and so little knowledge about this disease, I think it is a guessing game. Wish they would do some more research on us to try and determine what causes it and why...... And some long term studies about how it affects us over the long term and if children do outgrow maybe one form over another. I think some of the problem here is the fact that it is an Allergic disease with GI symptoms. We need a team who will research together............... I know Joy is interested in compiling a list of Doctors who specialize in EE, EG and posting it on her web site. I hope you will send her the information so she can contact them for permission, or ask them to contact her. I think that would be helpful to all of us. It would be nice to find some West coast doctors and some who treat Adults as well. JUDY (ADULT GE) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 1999 Report Share Posted December 10, 1999 Judy, I have to wonder if the disease is always there, is congenital, and worsens with both time and exposure. Steph. Re: [eosinophilic gastroenteritis] Who Outgrows it????? I wonder if that is true also for the ones who seemed to develop it as children. And what do you think about the rest of us who seemed to develop it as adults??? So many questions?? Judy Re: [eosinophilic gastroenteritis] Who Outgrows it????? With us, we all had it from birth, problems could be traced way back to baby-dom, though some were much more severe than others. S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 1999 Report Share Posted December 10, 1999 Judy- My husband was scoped just for the purpose of rulling it out. His biopsies showed reflux, but no eos. He is highly allergic individual, but does not appaer to have EE or EG.,... I think here are people who can live with the disease and not know it. My oldest has periodic exacerbations... a lot of people could mistake it for indigestoin that just never gets treated well. If it is severe enough, however, I think there will be strictures and problems developign over time. S. Re: [eosinophilic gastroenteritis] Who Outgrows it????? That is a good probability, The thing that might not hold up there is that it is so rare and that other than you guys I have not heard of it running in families. But then with such varied symptoms I wonder if people live their whole lives with it and it only causes minor irritation for them and not severe pain like it has in us. I guess another possibility is that as in Cystic Fibrosis, both parents have to be carriers. There has been a history in my family for years of stomach problems, but mostly ulcers and Gerd. But what if some of those were misdiagnosed. I remember a few months back that we were hearing from a lot of Moms who were having symptoms, I wonder if any of them have followed up? I also wonder if I could have had this but just not had the major exacerbation's before. I am really wondering about the Latex thing. Can you be allergic to it internally and not have external symptoms??? Judy Re: [eosinophilic gastroenteritis] Who Outgrows it????? With us, we all had it from birth, problems could be traced way back to baby-dom, though some were much more severe than others. S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 1999 Report Share Posted December 10, 1999 , I konw you know I know where you're coming from (that sounds silly doesnt it) ..... and I hope this won't take you down even further. I've been really really worried lately, that Spencer and Kody wont be allowed transplant. If we cant control their disease, there is no reason to believe they wouldnt destroy the next set of organs.... Has anyone told you they'd let Spenc HAVE the organs? I had a doc mention to me that Kody might not be a candidate because of his eos disease. Steph. Re: [eosinophilic gastroenteritis] Who Outgrows it????? Hey........ What about EC (Eosinophilic Colitis)???? Of course Spencer has them all. But don't forget about that one. It is his major effected area. I disagree to a point that it is just an allergy disease. It was explained to me at Children's hospital of Pittsburgh very simply put. If the source of the allergen (food) significantly reduces the Eos's in the gut when put on different types of elemental formula then it is looked at as an allergen triggered disease. But in Spencer's case....nothing would take away the Eos's in his Colon except steroids as well as nothing but Vivonex, and still we are fighting a battle. Now he is receiving nothing by gut.....(which is not the best) and he still has eos's in his Colon. He has been on an absolutely huge amount of steroids via IV and via the gut for 1 1/2 years now. And I am not talking about the standard 1-2 mg per Kilo. He is at least getting double that or more. So basically what I am saying is........it is an internal reaction to allergies but not always. It CAN just be where allergens are not the source of the disease.....in extreme cases such as Kody, Spencer and they have to rely on IV nutrients to survive. I also wish that they would do more research on this disease b/c it is so unclear, but if you really look at it (as sad as it is) there are not enough of us out here that have the disease for them to warrant doing tons of research which is solely based on MONEY! Sometimes, actually.....I hate money! Some might disagree with me on this, but this is what I have learned, but of course I am always open to ANYTHING AT THIS POINT! Because my child is eventually going to need a transplant of his liver b/c of his extreme case of this disease. Sometimes I just cry when some talk about having to cut back a few foods out of the diet, when I just wish my child would drink water. BUT, I do know that where ever you are at in this disease it is still very hard to deal with no matter what you are facing. Another way explained, when I see my sister's very chubby 2 year old downing food (but does have allergy restrictions).....it makes me very sad. I have gotten quite used to it, and I am not discounting how hard it is with a child who has eaten anything they have wanted and now have to go down to just a few foods.....it is, I am positive very hard on the child. I just wish it could be that way for us. Well, my response has now turned into a pity party. I'm sorry, every once in a while I just have to vent it all out to people that can understand. Love, [eosinophilic gastroenteritis] Who Outgrows it????? > > > Since I have been on this list I seem to have seen three patterns of EG, EE, > development. There seem to be those who develop it as infants, then there > appear to be some in who it starts about age 10, and then there are those > who develop it as adults. There may be other patterns of development, but > those are the ones I have recognized from my reading here. > > I know that there are three different layers involved in the stomach and > intestine and these may present a little differently also. However it seems > that most here don't know which layer is involved. It may not be that > significant in the treatment of the disease. But I wonder if it could be > significant in who outgrows it and who doesn't? > > With so many variables, and so little knowledge about this disease, I think > it is a guessing game. Wish they would do some more research on us to try > and determine what causes it and why...... And some long term studies about > how it affects us over the long term and if children do outgrow maybe one > form over another. I think some of the problem here is the fact that it is > an Allergic disease with GI symptoms. We need a team who will research > together............... > > I know Joy is interested in compiling a list of Doctors who specialize in > EE, EG and posting it on her web site. I hope you will send her the > information so she can contact them for permission, or ask them to contact > her. I think that would be helpful to all of us. It would be nice to find > some West coast doctors and some who treat Adults as well. > > JUDY (ADULT GE) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 1999 Report Share Posted December 10, 1999 Judy Just think about it. You go to the resturant and they handle food that you swallow. I would think the symptoms could be on the inside since there is no exposure externally. judy wrote: > That is a good probability, The thing that might not hold up there is > that it is so rare and that other than you guys I have not heard of it > running in families. But then with such varied symptoms I wonder if > people live their whole lives with it and it only causes minor > irritation for them and not severe pain like it has in us. I guess > another possibility is that as in Cystic Fibrosis, both parents have > to be carriers. There has been a history in my family for years of > stomach problems, but mostly ulcers and Gerd. But what if some of > those were misdiagnosed. I remember a few months back that we were > hearing from a lot of Moms who were having symptoms, I wonder if any > of them have followed up? I also wonder if I could have had this but > just not had the major exacerbation's before. I am really wondering > about the Latex thing. Can you be allergic to it internally and not > have external symptoms??? Judy > > Re: [eosinophilic gastroenteritis] Who > Outgrows it????? > With us, we all had it from birth, > problems could be traced way back to > baby-dom, though some were much more > severe than others. S. > Quote Link to comment Share on other sites More sharing options...
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