Guest guest Posted May 2, 1999 Report Share Posted May 2, 1999 Spencer has been on Iv and oral steroids for a year now. Ask your doctor if he has heard of Budesonide and would he concider putting your child on it. You would then need to go see a doctor somewhere in Canada. The two doctors would talk before hand, of course. Then you can continue getting refills through the doctor in Canada. [eosinophilic gastroenteritis] eg Hi , How long has your son been on steroids? Alyssa has been on them since Jan and her GI said she has to come off. But since he has lowered the dose she wont eat and she has started to complain that her stomach hurts and started to get sick. not sure if it is eg or because she wont eat. Can you tell me more about Budesonide and how to get it? Thanks Tina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 1999 Report Share Posted May 5, 1999 My son was on pediasure which actually tastes very good. >From: LeeWagner@... >Reply-To: eosinophilic gastroenteritis (AT) onelist (DOT) com >To: eosinophilic gastroenteritis (AT) onelist (DOT) com >Subject: Re: [eosinophilic gastroenteritis] eg >Date: Wed, 5 May 1999 22:26:28 EDT > >From: LeeWagner@... > >In a message dated 5/5/99 2:39:24 PM Eastern Daylight Time, >timandtina@... writes: > ><< I am sure it is the taste. I have tried both myself and they are >gross. >What do I do? >> > >How old is your daughter? We have had Robin on the Neocate since she was >about 18 months old. She drinks it straight - no problems. Of course, she >was on Nutramigen prior to this, so I think this is actually an >improvement. >They sell flavor packets for the Neocate in a variety of fruit flavors. We >tried them with Robin and she flat out refused to drink it. They also make >orange-pineapple juice boxes - which many people have had success with. >Good >Luck. > >ETW > >------------------------------------------------------------------------ >What's " Grow to Give " ? >http://www.onelist.com >It's a new incentive program at ONElist. See homepage for details. _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 1999 Report Share Posted May 5, 1999 How much did he lower the predisone by? [eosinophilic gastroenteritis] eg >From: timandtina@... > >Hi everyone, this is Tina mother of Alyssa who has eg. Can someone please help me Yesterday Alyssa's dr put her back on formula. He gave us 2 kinds to try. Neocate and Elecare. He told to us to be stern with her and not give her anything else to drink. She can't hold it down. I am sure it is the taste. I have tried both myself and they are gross. What do I do? Her dr told me to give it a week. Every time she takes a drinks it comes right back up. He also lowered the prednizone so I guess it could be that too. SO WHAT DO I DO? any ideas??? >Tina > >------------------------------------------------------------------------ >Give back to your community through " Grow to Give. " >http://www.onelist.com >See homepage for details. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 1999 Report Share Posted May 5, 1999 In a message dated 5/5/99 2:39:24 PM Eastern Daylight Time, timandtina@... writes: << I am sure it is the taste. I have tried both myself and they are gross. What do I do? >> How old is your daughter? We have had Robin on the Neocate since she was about 18 months old. She drinks it straight - no problems. Of course, she was on Nutramigen prior to this, so I think this is actually an improvement. They sell flavor packets for the Neocate in a variety of fruit flavors. We tried them with Robin and she flat out refused to drink it. They also make orange-pineapple juice boxes - which many people have had success with. Good Luck. ETW Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 1999 Report Share Posted May 6, 1999 In a message dated 5/5/99 2:39:15 PM Eastern Daylight Time, timandtina@... writes: << I am sure it is the taste. I have tried both myself and they are gross. What do I do? >> refused to drink the Neocate 1+ when he was two years old. We used the ng tube. I fought the doc on the idea of the tube at first but finally relented. It was the best thing we ever did for and was not near as bad as I had expected. Jen ( 11/7/95, EE, food allergies, asthma) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 1999 Report Share Posted May 6, 1999 Hi Tina, Spencer is very sensitive to steroid taper. He has to be on a very high dose. We do it 1cc every week. So for us to cut it all off would take 32 weeks. Our doctor has told us that a quick taper is too dramatic. When the steroids are in our system our body doesn't produce it and the longer you are on them the harder it is to get you body to start to produce them. Does this make sense? Spencer has been on TPN feedings because of this and now we are going back to them. And we are not even at 1/2 dose yet. This has taken us months to get to. It is very frustrating to deal with. My opinion, and I am not a doctor, is that the cut in half method he uses is way to much. The slower the better. Personally I am not sure if kids that have it soooo bad will ever be able to get off of it. Love, [eosinophilic gastroenteritis] eg >From: timandtina@... > >This is Tina. I was wondering if after your child was on high doses of prenisone and then taken off to a much lower dose do the all the symptoms return or is the child better. It is becoming apparent to me that the prednisone just covers up the problems and once stopped they return and they are worse. Has anyone else went through this or is this just Alyssa? If this is the case why do they put the kids on it? I just don't know if it is worth the trouble since they can't stay on it very long. I am having a real bad Day. >Will someone please tell me how to cope. 3 days ago I had a child that didn't cry alot and she didn't hurt as much. Since the prednisone was cut in half she can't sleep can't hold anything down and is driving me nuts. dr said give it a WEEK. >Tina > >------------------------------------------------------------------------ >With more than 14 million emails exchanged monthly. >http://www.ONElist.com >ONElist is truly helping connect the world! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 1999 Report Share Posted May 15, 1999 I think that is WAYYY too huge of a drop to make, we are weaning BJ now from 15 mg, we did 15 mg for a week, then 12 mg for a week, then 9 mg for a week, then 6 for a week, then 3 for 3 weeks. I have never seen a doc suggest that quick of a drop. BJ also gags when he runs (he has asthma too) so does my daughter Dakota too (she only has asthma, not eg), I think it does have something to do with the asthma in our case. Dawn timandtina@... wrote: > From: timandtina@... > > Hi all this is Tina I wanted to see if someone could help me with something. When Alyssa plays and runs for a short period of time she starts gaging then a short while throws ups. I don't think that is is asthma related,(she does have asthma) but I have only seen her have 2 bad cases.So is this just part of eg or something else? Is it possible for her to starting to have a attack? Usually I make her sit down and watch a movie when this happens. Any one else experience this type of whatever it is? Oh yeah her dr uped the pred back up to 20mg for the next 3 days and then she goes back to 5mg and then starting Monday back to the formula only this time no food at all. Is this upping and downing of prednisone going to confuse her body? thanks Tina > > ------------------------------------------------------------------------ > Got an opinion? > http://www.onelist.com > Make it count! Sign up for the ONElist Weekly Survey now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 1999 Report Share Posted May 17, 1999 regarding the issue of pred taper -- you can taper rapidly if needed, but it is not as good on the EG/EE. Kody is on a RAPID taper (from 80mg a day to 0 in 10 days)...we have to get him off before he goes to PIttsburgh in a week. Steph Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 1999 Report Share Posted June 27, 1999 Has Alyssa been on an elemental diet yet? (neocate, vivonex?) (eos esophagitis/GT, former TPNr) (Mom to 5 with EE/GTs; , , Korey, Kody (TPN), Killian Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 1999 Report Share Posted June 28, 1999 I am still here, too. Just haven't felt the messages to be anything concerning me. ashley 19 with eg _________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2000 Report Share Posted April 11, 2000 , My son (now 1) has went through the same problems but has been diagnosed with severe protein intolerences and not EG. At four months of age he was hospitalized for vomiting, diarreha and dehydration. At that time he was on Alimentum. When we started him on the Neocate he also had constipation problems for a few weeks. I used a glycerine suppository every two to three days until the constipation let up. He still has a rough time having bowel movements (unless he gets a hold of a " bad " food) but for the most part it is better than the alternative. If you would like more information on my experiences let me know. Take care. Tracey jpotter@... on 04/11/2000 09:47:50 AM Please respond to eosinophilic gastroenteritis (AT) e To: eosinophilic gastroenteritis (AT) e cc: Subject: [eosinophilic gastroenteritis] eg My son is 5 months old. he was 3 months and hospitalized for severe diarreha and dehydration. we almost lost him. i was breastfeeding at the time. when i resummed breastfeeding he began having loose stools again. the dr placed him on Alimentum. he's had trouble on that too, blood in the stool. he was on neocate for 2 days and got terribly constipated. he's back on alimentum. he's had several biopsies and all ahow high levels of eosinophils and the dr. believes it to be EG. i need some information tracy ------------------------------------------------------------------------ Get paid for the stuff you know! Get answers for the stuff you don't. And get $10 to spend on the site! http://click.egroups.com/1/2200/5/_/474479/_/955472126/ ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2000 Report Share Posted April 11, 2000 Hi , I would first put your son back on Neocate or Elecare. If you have a constipation problem you can give him things to soften his stool. See if that helps with the blood. [eosinophilic gastroenteritis] eg My son is 5 months old. he was 3 months and hospitalized for severe diarreha and dehydration. we almost lost him. i was breastfeeding at the time. when i resummed breastfeeding he began having loose stools again. the dr placed him on Alimentum. he's had trouble on that too, blood in the stool. he was on neocate for 2 days and got terribly constipated. he's back on alimentum. he's had several biopsies and all ahow high levels of eosinophils and the dr. believes it to be EG. i need some information tracy ------------------------------------------------------------------------ Get paid for the stuff you know! Get answers for the stuff you don't. And get $10 to spend on the site! http://click.egroups.com/1/2200/5/_/474479/_/955472126/ ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2000 Report Share Posted April 11, 2000 Eg is different than Celiac disease though, the treatment is different. [eosinophilic gastroenteritis] EG > > > > Guys, > > Can eosinophils cause the villi to be flattened or worn down or > damaged? > > Di > > > > ------------------------------------------------------------------------ > > Earn $500 by transferring your big list to eGroups. > > For details click here: > > http://click.egroups.com/1/2980/5/_/474479/_/955474615/ > > ------------------------------------------------------------------------ > > > > > > > > > ------------------------------------------------------------------------ > Avoid the lines and visit avis.com for quick and easy online > reservations. Enjoy a compact car nationwide for only $29 a day! > Click here for more details. > http://click.egroups.com/1/3011/5/_/474479/_/955475108/ > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2000 Report Share Posted April 11, 2000 Definitely!!! BJ's are the same way, BTW, he is 4-1/2 and was diagnosed with EG at 2. Dawn, Loving mommy to 2 girls and a super strong little boy Ebay seller ID - mommyto3greatkids [eosinophilic gastroenteritis] EG > Guys, > Can eosinophils cause the villi to be flattened or worn down or damaged? > Di > > ------------------------------------------------------------------------ > Earn $500 by transferring your big list to eGroups. > For details click here: > http://click.egroups.com/1/2980/5/_/474479/_/955474615/ > ------------------------------------------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2000 Report Share Posted April 11, 2000 , There are no tests to determine the protein intolerance, yet there are tests to rule everything else out. Also trial and error on different foods. They have ruled out Celiac, Cystic Fibrosis, Colitis and supposedly food allergies. Although they have only done scratch tests for the food allergies. He just recently had an endoscopy and colonoscopy and everything looked good. Of course my GI said that was a result of doing the scopes during a " good " time. Celiac is hereditary and is a gluten issue not just a wheat. You would be amazed at everything that contains gluten. can eat potatoes, rice (brown causes a problem), sweet potatoes, apples, squash and bananas. Anything premade is out, even infant rice cereal. Infant rice cereal contains soy oil so we use cream of rice cereal (near the cream of wheat). Of course he doesn't like this anymore. The Neocate has been our saving grace. He still takes 36 oz a day, and because of that is a very tall healthy guy. He is still in the 40% for weight but if you were to meet him you would never know he can hardly eat anything. I also worried about him getting dependent on the suppositories but my GI said not too. It was about 3 weeks before the constapation eased up. I highly suggest getting your son back on the Neocate, once his system adjusts to the amino acids his BMs will regulate. My GI told me he has never seen a child contine to be constipated on Neocate. It is expensive though! My insurance in so far refusing to cover it, so it comes out of our pocket. Through extensive investigation (all the way back to the United Kingdom) I found that SHS is the cheapest. The great thing about SHS is they pay shipping : ) It cost $115 a case (4 cans) and they have a two case minimum. Starting a age 4 months has gone through 3 cases a month. One thing to be happy about is your GI sounds very progressive. When was in the hospital (out of the area of course) the docs kept telling me it was a virus! Every time they would reintroduce the Alimentum he would start screaming and proceed to vomit or have diarreha. To this day my docs have never mentioned EG to me. I am the one who keeps pushing for the tests. My GI is content to let him stay on Neocate as long as he continues to thrive. Take care and if I can give you anymore information just let me know. Tracey jpotter@... on 04/11/2000 12:52:12 PM ----------------------------- --Tracey, what kind of tests did they do to determine a protein intolerance? i was using the suppositories on karson,when he was on the Neocate but was worried about him becoming dependent on them. the dr had only given us one can of the Neocate so we had to stop, and go back to the Alimentum. i don't know anything about this. Is your son able to eat regular foods. I have only been able to give Karson rice cereal. He's on Miralax now for the constipation. He had 5 loose stools yesterday so i haven't given him any today. my dr is talking about using a steroid to treat this, Prednizone? Did your son have to be on that? ------------------------------------------------------------------------ Get paid for the stuff you know! Get answers for the stuff you don't. And get $10 to spend on the site! http://click.egroups.com/1/2200/5/_/474479/_/955482738/ ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2000 Report Share Posted April 11, 2000 > > > Hi , > > > > > > I would first put your son back on Neocate or Elecare. If you have > > a > > > constipation problem you can give him things to soften his stool. > > See if > > > that helps with the blood. > > > > > > [eosinophilic gastroenteritis] eg > > > > > > > > > My son is 5 months old. he was 3 months and hospitalized for severe > > > diarreha and dehydration. we almost lost him. i was breastfeeding > > > at the time. when i resummed breastfeeding he began having loose > > > stools again. the dr placed him on Alimentum. he's had trouble on > > > that too, blood in the stool. he was on neocate for 2 days and got > > > terribly constipated. he's back on alimentum. he's had several > > > biopsies and all ahow high levels of eosinophils and the dr. > > believes > > > it to be EG. i need some information > > > > > > tracy > > > > > > > > > > > > > > ---------------------------------------------------------------------- > > -- > > > Get paid for the stuff you know! > > > Get answers for the stuff you don't. And get $10 to spend on the > > site! > > > http://click.egroups.com/1/2200/5/_/474479/_/955472126/ > > > > > ---------------------------------------------------------------------- > > --Hi , > > > > I was giving him suppositories for the constipation, but was afraid > > he would rely on them too much. The Dr. had only given us one can of > > the Neocate, so we had to put him back on the Alimentum. He was > > still constipated. We gave him Miralax, and he had 5 loose stools > > yesterday, no blood. I didn't give him any today, and he hasn't gone > > yet. I have to call the Dr. tomorrow to see if I should continue > > with the Miralax. I don't know anything about EG. So far we have > > only been able to give him rice cereal, will he ever be able to > > tolerate regular food? Where do you get the Neocate from, we were > > told you had to order it direct. Our insurance will not cover it. > > Any info you have i would really appreciate, i am very concerned. > > > > > > > > > > ---------------------------------------------------------------------- -- > > Get your money connected @ OnMoney.com - the first Web site that lets > > you see and manage all of your finances all in one place. > > http://click.egroups.com/1/3012/5/_/474479/_/955483224/ > > ---------------------------------------------------------------------- -- > >, We live in Wisconsin. Yes this is very over whelming and I'm scared to death. Karson has been gaining weight all along, but can't seem to shake the blood in his stools. it goes away for a couple of weeks and comes right back. He's had a colonoscopy but won't say for sure if it is EG. Is this something that is heriditory? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2000 Report Share Posted April 11, 2000 Not really sure if this runs in families or not. Although Steph has it and most of her boys have it. I have it and so does my son. It is so new I don't think that they are sure, although I went to the geneticist a few weeks ago and she is concerned that my baby girl (I'm 6 months preg) will end up with this. Spencer bleeds a lot too. His H & H are realllllly low. In fact we are drawing labs again (we drew them only 1 week ago) to check out his blood levels before we can safely go to Utah for a wedding. [eosinophilic gastroenteritis] eg > > > > > > > > > > > > My son is 5 months old. he was 3 months and hospitalized for > severe > > > > diarreha and dehydration. we almost lost him. i was > breastfeeding > > > > at the time. when i resummed breastfeeding he began having > loose > > > > stools again. the dr placed him on Alimentum. he's had > trouble on > > > > that too, blood in the stool. he was on neocate for 2 days and > got > > > > terribly constipated. he's back on alimentum. he's had several > > > > biopsies and all ahow high levels of eosinophils and the dr. > > > believes > > > > it to be EG. i need some information > > > > > > > > tracy > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------------------- > > > -- > > > > Get paid for the stuff you know! > > > > Get answers for the stuff you don't. And get $10 to spend on the > > > site! > > > > http://click.egroups.com/1/2200/5/_/474479/_/955472126/ > > > > > > > > ---------------------------------------------------------------------- > > > --Hi , > > > > > > I was giving him suppositories for the constipation, but was > afraid > > > he would rely on them too much. The Dr. had only given us one > can of > > > the Neocate, so we had to put him back on the Alimentum. He was > > > still constipated. We gave him Miralax, and he had 5 loose stools > > > yesterday, no blood. I didn't give him any today, and he hasn't > gone > > > yet. I have to call the Dr. tomorrow to see if I should continue > > > with the Miralax. I don't know anything about EG. So far we have > > > only been able to give him rice cereal, will he ever be able to > > > tolerate regular food? Where do you get the Neocate from, we were > > > told you had to order it direct. Our insurance will not cover it. > > > Any info you have i would really appreciate, i am very concerned. > > > > > > > > > > > > > > > > ---------------------------------------------------------------------- > -- > > > Get your money connected @ OnMoney.com - the first Web site that > lets > > > you see and manage all of your finances all in one place. > > > http://click.egroups.com/1/3012/5/_/474479/_/955483224/ > > > > ---------------------------------------------------------------------- > -- > > >, > > We live in Wisconsin. Yes this is very over whelming and I'm scared > to death. Karson has been gaining weight all along, but can't seem > to shake the blood in his stools. it goes away for a couple of weeks > and comes right back. He's had a colonoscopy but won't say for sure > if it is EG. Is this something that is heriditory? > > > > ------------------------------------------------------------------------ > Enjoy the award-winning journalism of The New York Times with > convenient home delivery. And for a limited time, get 50% off for the > first 8 weeks by subscribing. Pay by credit card and receive an > additional 4 weeks at this low introductory rate. > http://click.egroups.com/1/3102/5/_/474479/_/955485529/ > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2000 Report Share Posted April 11, 2000 > > , There are no tests to determine the protein intolerance, yet there > are tests to rule everything else out. Also trial and error on different > foods. They have ruled out Celiac, Cystic Fibrosis, Colitis and supposedly > food allergies. Although they have only done scratch tests for the food > allergies. He just recently had an endoscopy and colonoscopy and > everything looked good. Of course my GI said that was a result of doing > the scopes during a " good " time. Celiac is hereditary and is a gluten > issue not just a wheat. You would be amazed at everything that contains > gluten. > > can eat potatoes, rice (brown causes a problem), sweet potatoes, > apples, squash and bananas. Anything premade is out, even infant rice > cereal. Infant rice cereal contains soy oil so we use cream of rice cereal > (near the cream of wheat). Of course he doesn't like this anymore. The > Neocate has been our saving grace. He still takes 36 oz a day, and because > of that is a very tall healthy guy. He is still in the 40% for weight but > if you were to meet him you would never know he can hardly eat anything. I > also worried about him getting dependent on the suppositories but my GI > said not too. It was about 3 weeks before the constapation eased up. I > highly suggest getting your son back on the Neocate, once his system > adjusts to the amino acids his BMs will regulate. My GI told me he has > never seen a child contine to be constipated on Neocate. It is expensive > though! My insurance in so far refusing to cover it, so it comes out of > our pocket. Through extensive investigation (all the way back to the > United Kingdom) I found that SHS is the cheapest. The great thing about > SHS is they pay shipping : ) It cost $115 a case (4 cans) and they have a > two case minimum. Starting a age 4 months has gone through 3 cases > a month. > > One thing to be happy about is your GI sounds very progressive. When > was in the hospital (out of the area of course) the docs kept > telling me it was a virus! Every time they would reintroduce the > Alimentum he would start screaming and proceed to vomit or have diarreha. > To this day my docs have never mentioned EG to me. I am the one who keeps > pushing for the tests. My GI is content to let him stay on Neocate as long > as he continues to thrive. > > Take care and if I can give you anymore information just let me know. > > Tracey > > > > > jpotter@... on 04/11/2000 12:52:12 PM > ----------------------------- > --Tracey, > > what kind of tests did they do to determine a protein intolerance? i > was using the suppositories on karson,when he was on the Neocate but > was worried about him becoming dependent on them. the dr had only > given us one can of the Neocate so we had to stop, and go back to the > Alimentum. i don't know anything about this. Is your son able to > eat regular foods. I have only been able to give Karson rice > cereal. He's on Miralax now for the constipation. He had 5 loose > stools yesterday so i haven't given him any today. my dr is talking > about using a steroid to treat this, Prednizone? Did your son have > to be on that? > > > > > ---------------------------------------------------------------------- -- > Get paid for the stuff you know! > Get answers for the stuff you don't. And get $10 to spend on the site! > http://click.egroups.com/1/2200/5/_/474479/_/955482738/ > ---------------------------------------------------------------------- --Tracey, How old is now? I will definately talk to my GI about trying the Neocate again. Karson was initially seen at our local hospital where our family dr. said it was a virus and sent us home. We left there and went straight to another ER and they admitted him and med flighted him to Marshfield Hospital Peds ICU. I just hate not knowing what it is. Karson is 5 months and weighs 17 lbs. 8 oz. You would not know by looking at him either that he has any problems. i think the fact that he is gaining weight is encouraging. thanks for all your info. tracy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2000 Report Share Posted April 11, 2000 > > > > > Hi , > > > > > > > > > > I would first put your son back on Neocate or Elecare. If you > > have > > > > a > > > > > constipation problem you can give him things to soften his > > stool. > > > > See if > > > > > that helps with the blood. > > > > > > > > > > [eosinophilic gastroenteritis] eg > > > > > > > > > > > > > > > My son is 5 months old. he was 3 months and hospitalized for > > severe > > > > > diarreha and dehydration. we almost lost him. i was > > breastfeeding > > > > > at the time. when i resummed breastfeeding he began having > > loose > > > > > stools again. the dr placed him on Alimentum. he's had > > trouble on > > > > > that too, blood in the stool. he was on neocate for 2 days and > > got > > > > > terribly constipated. he's back on alimentum. he's had several > > > > > biopsies and all ahow high levels of eosinophils and the dr. > > > > believes > > > > > it to be EG. i need some information > > > > > > > > > > tracy > > > > > > > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------------------- > > > > -- > > > > > Get paid for the stuff you know! > > > > > Get answers for the stuff you don't. And get $10 to spend on the > > > > site! > > > > > http://click.egroups.com/1/2200/5/_/474479/_/955472126/ > > > > > > > > > > > ---------------------------------------------------------------------- > > > > --Hi , > > > > > > > > I was giving him suppositories for the constipation, but was > > afraid > > > > he would rely on them too much. The Dr. had only given us one > > can of > > > > the Neocate, so we had to put him back on the Alimentum. He was > > > > still constipated. We gave him Miralax, and he had 5 loose stools > > > > yesterday, no blood. I didn't give him any today, and he hasn't > > gone > > > > yet. I have to call the Dr. tomorrow to see if I should continue > > > > with the Miralax. I don't know anything about EG. So far we have > > > > only been able to give him rice cereal, will he ever be able to > > > > tolerate regular food? Where do you get the Neocate from, we were > > > > told you had to order it direct. Our insurance will not cover it. > > > > Any info you have i would really appreciate, i am very concerned. > > > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------------------- > > -- > > > > Get your money connected @ OnMoney.com - the first Web site that > > lets > > > > you see and manage all of your finances all in one place. > > > > http://click.egroups.com/1/3012/5/_/474479/_/955483224/ > > > > > > ---------------------------------------------------------------------- > > -- > > > >, > > > > We live in Wisconsin. Yes this is very over whelming and I'm scared > > to death. Karson has been gaining weight all along, but can't seem > > to shake the blood in his stools. it goes away for a couple of weeks > > and comes right back. He's had a colonoscopy but won't say for sure > > if it is EG. Is this something that is heriditory? > > > > > > > > ---------------------------------------------------------------------- -- > > Enjoy the award-winning journalism of The New York Times with > > convenient home delivery. And for a limited time, get 50% off for the > > first 8 weeks by subscribing. Pay by credit card and receive an > > additional 4 weeks at this low introductory rate. > > http://click.egroups.com/1/3102/5/_/474479/_/955485529/ > > ---------------------------------------------------------------------- --, thanks for the info, i will talk to my GI about the Elecare. Good luck with Spencers tests. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2000 Report Share Posted April 11, 2000 Nothing much right now b/c I am pregger's. I just take like 80 mg's of prilosec to help me from barfing all of the time. Re: [eosinophilic gastroenteritis] eg > wrote > I have it and so does my son. > > > Did I miss something here? I somehow missed the fact that you had been > diagnosed. What treatment are you using? > Judy > > > ------------------------------------------------------------------------ > Get your money connected @ OnMoney.com - the first Web site that lets > you see and manage all of your finances all in one place. > http://click.egroups.com/1/3012/5/_/474479/_/955487754/ > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2000 Report Share Posted April 11, 2000 Everywhere. After I am done cooking this babe they are going to do a bunch more things to get me feeling better. Re: [eosinophilic gastroenteritis] eg Where did they discover your EO's? Judy ------------------------------------------------------------------------ Get paid for the stuff you know! Get answers for the stuff you don't. And get $10 to spend on the site! http://click.egroups.com/1/2200/5/_/474479/_/955488376/ ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2000 Report Share Posted April 11, 2000 ahhh, your son at 5 months weighs almost as much as mine at 3 1/2. That is very depressing. Let's all hope for a very chubby lil girl come Aug 1st! Re: [eosinophilic gastroenteritis] eg > > > > > , There are no tests to determine the protein intolerance, yet > there > > are tests to rule everything else out. Also trial and error on > different > > foods. They have ruled out Celiac, Cystic Fibrosis, Colitis and > supposedly > > food allergies. Although they have only done scratch tests for the > food > > allergies. He just recently had an endoscopy and colonoscopy and > > everything looked good. Of course my GI said that was a result of > doing > > the scopes during a " good " time. Celiac is hereditary and is a > gluten > > issue not just a wheat. You would be amazed at everything that > contains > > gluten. > > > > can eat potatoes, rice (brown causes a problem), sweet > potatoes, > > apples, squash and bananas. Anything premade is out, even infant > rice > > cereal. Infant rice cereal contains soy oil so we use cream of > rice cereal > > (near the cream of wheat). Of course he doesn't like this > anymore. The > > Neocate has been our saving grace. He still takes 36 oz a day, and > because > > of that is a very tall healthy guy. He is still in the 40% for > weight but > > if you were to meet him you would never know he can hardly eat > anything. I > > also worried about him getting dependent on the suppositories but > my GI > > said not too. It was about 3 weeks before the constapation eased > up. I > > highly suggest getting your son back on the Neocate, once his system > > adjusts to the amino acids his BMs will regulate. My GI told me he > has > > never seen a child contine to be constipated on Neocate. It is > expensive > > though! My insurance in so far refusing to cover it, so it comes > out of > > our pocket. Through extensive investigation (all the way back to > the > > United Kingdom) I found that SHS is the cheapest. The great thing > about > > SHS is they pay shipping : ) It cost $115 a case (4 cans) and they > have a > > two case minimum. Starting a age 4 months has gone through > 3 cases > > a month. > > > > One thing to be happy about is your GI sounds very progressive. > When > > was in the hospital (out of the area of course) the docs > kept > > telling me it was a virus! Every time they would reintroduce the > > Alimentum he would start screaming and proceed to vomit or have > diarreha. > > To this day my docs have never mentioned EG to me. I am the one > who keeps > > pushing for the tests. My GI is content to let him stay on Neocate > as long > > as he continues to thrive. > > > > Take care and if I can give you anymore information just let me > know. > > > > Tracey > > > > > > > > > > jpotter@... on 04/11/2000 12:52:12 PM > > ----------------------------- > > --Tracey, > > > > what kind of tests did they do to determine a protein intolerance? > i > > was using the suppositories on karson,when he was on the Neocate but > > was worried about him becoming dependent on them. the dr had only > > given us one can of the Neocate so we had to stop, and go back to > the > > Alimentum. i don't know anything about this. Is your son able to > > eat regular foods. I have only been able to give Karson rice > > cereal. He's on Miralax now for the constipation. He had 5 loose > > stools yesterday so i haven't given him any today. my dr is talking > > about using a steroid to treat this, Prednizone? Did your son have > > to be on that? > > > > > > > > > > > ---------------------------------------------------------------------- > -- > > Get paid for the stuff you know! > > Get answers for the stuff you don't. And get $10 to spend on the > site! > > http://click.egroups.com/1/2200/5/_/474479/_/955482738/ > > > ---------------------------------------------------------------------- > --Tracey, > > How old is now? I will definately talk to my GI about trying > the Neocate again. Karson was initially seen at our local hospital > where our family dr. said it was a virus and sent us home. We left > there and went straight to another ER and they admitted him and med > flighted him to Marshfield Hospital Peds ICU. > > I just hate not knowing what it is. Karson is 5 months and weighs 17 > lbs. 8 oz. You would not know by looking at him either that he has > any problems. i think the fact that he is gaining weight is > encouraging. thanks for all your info. > > tracy > > > ------------------------------------------------------------------------ > Now the best and coolest websites come right to you based on your > unique interests. eTour.com is surfing without searching. > And, it's FREE! > http://click.egroups.com/1/3013/5/_/474479/_/955486533/ > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2000 Report Share Posted April 11, 2000 Judy, Are you on steroids right now? Re: [eosinophilic gastroenteritis] eg Where did they discover your EO's? Judy ------------------------------------------------------------------------ Get paid for the stuff you know! Get answers for the stuff you don't. And get $10 to spend on the site! http://click.egroups.com/1/2200/5/_/474479/_/955488376/ ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2000 Report Share Posted April 11, 2000 wrote I have it and so does my son. Did I miss something here? I somehow missed the fact that you had been diagnosed. What treatment are you using? Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2000 Report Share Posted April 11, 2000 Where did they discover your EO's? Judy Quote Link to comment Share on other sites More sharing options...
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