Guest guest Posted December 3, 1999 Report Share Posted December 3, 1999 We have for several months try to pinpoint the certain foods that could possibly be causing the vomiting, but cannot figure it out. There are days he can tolerate something and maybe a week later he can eat the same thing and throwup. I just do not know what else to think. Is this something we are going to have to live with for the rest of his life or will he out grow this? sjh wrote: > Just thought I should insert a little information here... Skin > testing is not a reliable means by which you can determine > cause/effect of GI disease in many kids. For that matter, even blood > allergy testing (RAST) cannot be used as a reliable marker. Certainly > these tests will determine an allergy but it may have nothing to do > with the GI symptoms. For example, many children are skin/RAST test > NEGATIVE to foods that when ingested, will cause tremendous GI side > effects and eos inflammation. In contrast, there are many foods that > test POSITIVE that some kids can eat with no GI symptoms > whatsoever. There is a growing sense that kids with EG/EE/EC kids it > is an actual protein intolerance period... having less to do with a > specific food protein, just the complete protein in general. I just > dont want anyone to get their hopes up that allergy testing is going > to provide much direction for treatment plans. Only open food > challenges can do that. Steph (EE/GT and mom to five with EE/GTs , > Ken, Korey, Kody (TPN) and Killian) > > Re: [eosinophilic gastroenteritis] okies > We have not done the skin testing, Trey's doctor feel that > is not necessary. We > are still awaiting a call from the doctror 3 days later. I > think I am go to > insist that the test be done. I live in Goliad, Texas which > is about 3 hours from > Houston. I will keep you informed. > > Ssrams@... wrote: > > > From: Ssrams@... > > > > In a message dated 12/2/99 11:36:23 AM Central Standard > Time, > > mmoya@... writes: > > > > << From: mmoya@... ( Moya) > > Reply-to: eosinophilic gastroenteritis (AT) onelist (DOT) com > > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > > > > > > > > We have been taking my son to Houston-Texas Children's > Hospital to a GI > > there and > > so far have been pretty satisfied with him, but as I > speak I am waiting for a > > phone call from his since yesterday afternoon. My son > (4yrs. old) was > > diagnosed > > with Eosiopholic Gastr., we are trying to figure out was > is causing the > > spontaneous vomiting. We have tried prednisone and as > long as he is on it > > he is > > fine. We just weaned him off slowly after 7wks. and > three days later he > > threw > > up. He has only thrown up 2 times in one week. But I am > so worried it is > > going > > to lead up to the way it was before we put him on > prednisone, he was > > throwing up > > once, twice a day or every day or even every other day. > He has no other > > symtoms > > but the vomiting. His doctor in Houston did the blood > work for food > > allergies > > and said there were no signs of any allergies. I am just > a basket case, not > > knowing if it will every get better. This has been going > on since Feb. 99, > > almost one year. I am so ready for some anwers. It has > made me feel good to > > know that there are other people out there with the same > problems. It is so > > nice > > to communicate with other people that can relate. Help, > any > > suggestions???????? >> > > > > Hi my name is Tina and welcome to the club. my > daughter is 3 1/2 and > > we have the same problem. she now has the button and is > formula fed. after a > > trial run with prednisone 9 months she she was taken off > and put back on > > after being off for 6 wks. she too can't function with > out so here we are. > > you talked about testing for allergies did they do the > skin test? that is > > how we found out about Alyssa's allergies and hers just > kept getting worse. > > Do you live in Texas we live in Sherman that is about 5 > 1/2 hrs from houston. > > Good luck and let me know what happens. Tina > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 1999 Report Share Posted December 3, 1999 Some kids do outgrow it. I'm told a LOT of them outgrow it. However, I have not and none of my kids are expected to. It takes days for our kids to show reactions to foods. We also have figured out that it is more the AMOUNT they eat of anything or any combination as opposed to WHAT (although there are a few specific foods we know cause symptoms). It sounds like that may be what you are going through too. It seems like they " build up " reaction to the protein until it " explodes " , or they react. Is your son on an elemental diet yet, i.e. one of the formula amino-acid based formulas? You may try smaller amounts of a small variety of foods, but again, I suspect it is an intolerance to food proteins period in a lot of cases. There was a gentleman on this list with EG who is able to control his disease by a severely limited diet. Steph. Re: [eosinophilic gastroenteritis] okies > We have not done the skin testing, Trey's doctor feel that > is not necessary. We > are still awaiting a call from the doctror 3 days later. I > think I am go to > insist that the test be done. I live in Goliad, Texas which > is about 3 hours from > Houston. I will keep you informed. > > Ssrams@... wrote: > > > From: Ssrams@... > > > > In a message dated 12/2/99 11:36:23 AM Central Standard > Time, > > mmoya@... writes: > > > > << From: mmoya@... ( Moya) > > Reply-to: eosinophilic gastroenteritis (AT) onelist (DOT) com > > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > > > > > > > > We have been taking my son to Houston-Texas Children's > Hospital to a GI > > there and > > so far have been pretty satisfied with him, but as I > speak I am waiting for a > > phone call from his since yesterday afternoon. My son > (4yrs. old) was > > diagnosed > > with Eosiopholic Gastr., we are trying to figure out was > is causing the > > spontaneous vomiting. We have tried prednisone and as > long as he is on it > > he is > > fine. We just weaned him off slowly after 7wks. and > three days later he > > threw > > up. He has only thrown up 2 times in one week. But I am > so worried it is > > going > > to lead up to the way it was before we put him on > prednisone, he was > > throwing up > > once, twice a day or every day or even every other day. > He has no other > > symtoms > > but the vomiting. His doctor in Houston did the blood > work for food > > allergies > > and said there were no signs of any allergies. I am just > a basket case, not > > knowing if it will every get better. This has been going > on since Feb. 99, > > almost one year. I am so ready for some anwers. It has > made me feel good to > > know that there are other people out there with the same > problems. It is so > > nice > > to communicate with other people that can relate. Help, > any > > suggestions???????? >> > > > > Hi my name is Tina and welcome to the club. my > daughter is 3 1/2 and > > we have the same problem. she now has the button and is > formula fed. after a > > trial run with prednisone 9 months she she was taken off > and put back on > > after being off for 6 wks. she too can't function with > out so here we are. > > you talked about testing for allergies did they do the > skin test? that is > > how we found out about Alyssa's allergies and hers just > kept getting worse. > > Do you live in Texas we live in Sherman that is about 5 > 1/2 hrs from houston. > > Good luck and let me know what happens. Tina > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 1999 Report Share Posted December 3, 1999 The doctor we are seeing now in Houston is the second GI we have seen. We saw one in Corpus Christi he scoped him and discovered the inflammation of the stomach lining, that is what he told us, he put Trey on Prilosec and this did not work, so he told us to keep him on it and call him in a month, that is when we decided we would take Trey to another dr. for a second opinion. We decided to go to Houston and he decided to scope again and also do a colonoscopy and found the same thing , but he called it eosinophilic gastroenteritis. He also treated him for a parasite because sometimes they do not show up in test results, this did not work. He put him on prednisone for a short time and once he was off he started up again. So he tried to put him back on it for a little longer and also try to wean him off a different way and also wean him off slower. 3days after he was off of it he threw up. He has only thrown up twice since being off of the prednisone for 10 days. Good news to share---His doctor's nurse just called and she is calling a prescription for us to try. I went to pick it up and the drug store has to order it because it is a new medication. When I get it I will let you know the name and what it is supposed to do. Here's hoping and praying. We all need to keep each other in our prayers. Thank you all for being here for me!!!!!!!!! Ssrams@... wrote: > From: Ssrams@... > > I just wanted to tell you that it was difficult to begin with now ALyssa is > handleing it really good. she knows that food makes her sick, so she sticks > to her water. It may take a little getting used to but it is worth it. I was > curious Is the prednisone all your GI has done? Tina > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 1999 Report Share Posted December 3, 1999 Judy-- I have gone to the web site and started to add AJ's info. There was so much that I haven't finished yet. AJ was in the ER a few weeks and almost today (asthma). It is so hard when the triage nurse says any allergies?? Where do you begin?? I have to get back there and finish updating the records. Phyllis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 1999 Report Share Posted December 3, 1999 - My daughter, AJ, will be 4 in 19 days and has been in school for a year and a half now. Her teachers are wonderful and the kids are wonderful. They watch out for her. When she started school, I was panicked. I pictured her picking up every little scrap left on the floor. She knows if she eats she gets sick. The kids know if she eats, she gets sick. At home, AJ will beg for food at times, even though she can't have it. Kids don;t act this way with teachers. It is all an act for the parents. It is hard not to worry, but it will be okay. Phyllis--mom to AJ (12/22/95) EG, GERD, Asthma, Allergies, speech delay and hearing loss Remi (8/3/92) Spina Bifida, LATEX, peanuts, shellfish, & nut allergies Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 1999 Report Share Posted December 3, 1999 In a message dated 12/3/99 6:20:19 AM Pacific Standard Time, stephy8ch@... writes: << There is a growing sense that kids with EG/EE/EC kids it is an actual protein intolerance period... having less to do with a specific food protein, just the complete protein in general. >> so does that mean the kids can't have any protien? don't youi need protien to live? Cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 1999 Report Share Posted December 3, 1999 Phyllis, I started mine and got worn out too. I still have to finish it and then do the rest of my family. I think that it could be very useful though. For me the prescriptions are going to take a while, but how nice if the docs can just get a fax with all the info and I don't have to answer all those questions when I am in pain. I read more and found out that lab work etc. can be faxed to this site and then we have the options of what goes into the emergency pages. If it works the way it is supposed to it will be great. Judy Re: [eosinophilic gastroenteritis] Skin Testing > > > Judy-- > I have gone to the web site and started to add AJ's info. There was so much > that I haven't finished yet. AJ was in the ER a few weeks and almost today > (asthma). It is so hard when the triage nurse says any allergies?? Where > do you begin?? I have to get back there and finish updating the records. > Phyllis > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2000 Report Share Posted March 28, 2000 BJ had testing at about 3-1/2 and they did 20 on his back. Dawn [eosinophilic gastroenteritis] Skin Testing > > > Hi, > > I have a few questions......Spencer seems as if he is reacting to just > fumes of food and also a lot of other things as well (not just food). > > Dr. Putnam just told me that he would like Spencer skin tested for > as much as he possibly be tested for so that we know not to let him > around the fumes and what really to stay away from. > > I was wondering if those of you who have been through skin testing > yourself or with your kids if their Eos's have gotten worse because > of the actual skin testing itself? I just know that Spencer reacts so > terribly to things that I am afraid it will send him downhill. > > Also, in a child who is 3 1/2, will they do only a few skin tests at one > time? > > Any other information would be appreciated whether it be good or bad. > > TIA, > > > > ------------------------------------------------------------------------ > LOW RATE, NO WAIT! > Get a NextCard Visa, in 30 seconds! Get rates > as low as 2.9% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > http://click.egroups.com/1/2122/5/_/474479/_/954297351/ > ------------------------------------------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
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