Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 Kathy, Sharon, the list owner has a twin child that had terrible eczema but he also had other symptoms. He was put on Neocate. I'm not sure, but I think they switched to Elecare too. It stopped the skin problems. But crying a lot after feeds would be an indication that there is a problem. If your older child had elevated Eos's and had skin problems it doesn't mean that she should be on an elemental formula.....it's the symptoms that count. Like in Spencer's case, being 3 years old and only 19 lbs., constant stools, gagging and retching (cause he can't vomit now) and severe belly aches these are symptoms that you can't ignore or treat with Zyrtec type medications. How about retesting your older child to see where the eos's are right now. If she doesn't complain about anything when she eats or has weird bowel movements than I really wouldn't worry. Re: [eosinophilic gastroenteritis] Eosinophil Colitis > > > Date: Tuesday, January 18, 2000 4:52 PM > > > > > > > > > > > > Kathy, > > > > > > A couple of suggestions. First of all, Ross Pharmaceuticals makes a > > product > > > identical to Neocate except MADE IN THE USA AND A LOT CHEAPER. It is > > called > > > Elecare. I would suggest you seek that out as an alternative. > > > > > > I would ask and Beatrix to answer your question about whether or > > not > > > one negative colon biopsy rules out for EC. I think the results can be > > hit > > > and miss and there may be sections that are clear when some are not??? > > Not > > > sure on that one. My kids (5) and I have EE (esophagus only). > > > > > > The one really big, huge, wonderful thing you have in your corner is your > > > son's weight! Hallelujah for that big boy! > > > > > > Most of the kids with eosinophilic diseases don't seem to have a clear > > > hereditary link. Obviously, in my family it is distinctly different but > > we > > > seem to be the exception. > > > > > > I would be very, very careful, however, with relying on skin testing and > > > blood testing for any GI link to allergy. With these eosinophilic > > diseases, > > > there is no proven link, and the docs should KNOW THIS. The foods you > > are > > > giving him with just a few exceptions tend toward the safer less allergic > > > foods. I would be very, very careful re-introducing anything or > > introducing > > > anything. Give it 5-7 days at least before you stop watching for > > symptoms. > > > There isnt much harm in trying it as long as you are prepared to watch > > and > > > take care of any possible consequences, particularly with your doctor's > > > blessing. However, use your mom's common sense as your guide -- I > > strongly > > > believe in mom's intuition on these things. Whatever you do, keep him on > > > Neocate (or Elecare) as long as it takes to figure out exactly what is > > going > > > on. If you take him off it while you try to figure out a diet, you may > > > never be able to get him to take it orally again and end up with G-tubes > > (as > > > my entire family except hubby and one kid now have). > > > > > > Good luck... did I answer everything? > > > > > > Steph. > > > > > > > > > > > > > > > > > > __________________________________________________ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 absolutely positively agree. Breast feed until you can come up with a plan- Steph. Re: [eosinophilic gastroenteritis] Eosinophil Colitis My daughter was totally breast fed for ten months. If your son is doing well on breast milk, it would seem to me that it would be a good idea to totally breast feed for as long as possible. You might want to check and see if there is a LaLeche League group in your area, or some other breast feeding support group. They would have the latest info on how long you can safely breast feed without adding additional foods. I know this is not a long term solution, but might give you a few more months to help him get as good a start as possible.. Just my opinion.... Judy [eosinophilic gastroenteritis] Eosinophil Colitis From: anke_grunwald@... Hi all, my son n is five and a half months old and suffers from eosinophil colitis since he was born in August, 1999. I am still nursing him, however next month I should give him additional food. Do you have any experience what kind of food is suitable for him? We do not get help from our doctor. He has not heard about the desease up to now (we are living in Germany), he recommends to " try out " . Is there anybody out there whose baby is in a similar situation? n currently is going pretty well, he is normally gaining height and weight. There is very little blood left in his stools, and all symptoms of diarrhoe are gone (he now has stool every second day). While nursing him, I have had a strong diet without milk or milk product, fish, egg, nuts, and - since december - porc meat. Without eating porc meat, my son is going better while leaving out milk and milk product did not improve his situation significantly. Please, if you have any idea what he can eat in the future, let me know. Best regards, Anke ------------------------------------------------------------------------ Please click above to support our sponsor ------------------------------------------------------------------------ ---------------------------------------------------------------------------- Please click above to support our sponsor ---------------------------------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 absolutely positively agree. Breast feed until you can come up with a plan- Steph. Re: [eosinophilic gastroenteritis] Eosinophil Colitis My daughter was totally breast fed for ten months. If your son is doing well on breast milk, it would seem to me that it would be a good idea to totally breast feed for as long as possible. You might want to check and see if there is a LaLeche League group in your area, or some other breast feeding support group. They would have the latest info on how long you can safely breast feed without adding additional foods. I know this is not a long term solution, but might give you a few more months to help him get as good a start as possible.. Just my opinion.... Judy [eosinophilic gastroenteritis] Eosinophil Colitis From: anke_grunwald@... Hi all, my son n is five and a half months old and suffers from eosinophil colitis since he was born in August, 1999. I am still nursing him, however next month I should give him additional food. Do you have any experience what kind of food is suitable for him? We do not get help from our doctor. He has not heard about the desease up to now (we are living in Germany), he recommends to " try out " . Is there anybody out there whose baby is in a similar situation? n currently is going pretty well, he is normally gaining height and weight. There is very little blood left in his stools, and all symptoms of diarrhoe are gone (he now has stool every second day). While nursing him, I have had a strong diet without milk or milk product, fish, egg, nuts, and - since december - porc meat. Without eating porc meat, my son is going better while leaving out milk and milk product did not improve his situation significantly. Please, if you have any idea what he can eat in the future, let me know. Best regards, Anke ------------------------------------------------------------------------ Please click above to support our sponsor ------------------------------------------------------------------------ ---------------------------------------------------------------------------- Please click above to support our sponsor ---------------------------------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 absolutely positively agree. Breast feed until you can come up with a plan- Steph. Re: [eosinophilic gastroenteritis] Eosinophil Colitis My daughter was totally breast fed for ten months. If your son is doing well on breast milk, it would seem to me that it would be a good idea to totally breast feed for as long as possible. You might want to check and see if there is a LaLeche League group in your area, or some other breast feeding support group. They would have the latest info on how long you can safely breast feed without adding additional foods. I know this is not a long term solution, but might give you a few more months to help him get as good a start as possible.. Just my opinion.... Judy [eosinophilic gastroenteritis] Eosinophil Colitis From: anke_grunwald@... Hi all, my son n is five and a half months old and suffers from eosinophil colitis since he was born in August, 1999. I am still nursing him, however next month I should give him additional food. Do you have any experience what kind of food is suitable for him? We do not get help from our doctor. He has not heard about the desease up to now (we are living in Germany), he recommends to " try out " . Is there anybody out there whose baby is in a similar situation? n currently is going pretty well, he is normally gaining height and weight. There is very little blood left in his stools, and all symptoms of diarrhoe are gone (he now has stool every second day). While nursing him, I have had a strong diet without milk or milk product, fish, egg, nuts, and - since december - porc meat. Without eating porc meat, my son is going better while leaving out milk and milk product did not improve his situation significantly. Please, if you have any idea what he can eat in the future, let me know. Best regards, Anke ------------------------------------------------------------------------ Please click above to support our sponsor ------------------------------------------------------------------------ ---------------------------------------------------------------------------- Please click above to support our sponsor ---------------------------------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 Hi Kathy; Yes has bad eos and he is not on steroids but on another drug that is not approved in the USA. He was so bad for months putting out blood every time he ate I thought I was going mad. Finally after they biopsied they realised the EOS. To make things worse his blood levels are really not that high. Just something my son is famous for. Never by the book. He has short gut too due to Hirschsprung disease so that is no help. Right now he has had low grade fevers since he was sick with an unknow bug in November. I was just whining to his GI doc. So this is her thought. Either the virus really put his bowel in a spin so that she is thinking of changing the allergy drug. Also she figure he might be treated more as an inflamatory bowel disease and also hopes maybe something else is causing things to go wrong like sinusitis. All I know is that he is so pale and that he doubles over in pain every time he eats. I can't even try giving him Neocate by g tube and we are full TPN again with eating as little as possible. I am ready to scream and to top it off his hydration fluids are running at high gear to keep him hydrated. Nothing really is making much sense anymore. All I know that I never have looked forward to a scope as much as I am now. She thinks they will do it soon. My soon and their soon is two different things. Oh god I hate this waiting and meanwhile he doesn't even last an hour at school. I got nursing now and yet I can't seem to get anything done. Its been 7 years of hell of one thing or anther and I find the older he gets the more severe things are getting. Am I the only one or do others feel this way too. No one really to compare him too since he has such a short screwed up gut. Darn it I am whining again. Well not mean to depress you but its a really difficult thing to deal with EOS. It is hereditary in our case and runs with the asthma gene. SO AI know I am not much help. We just seem to keep trouble shooting but never getting ahead. Beatrix Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 Steph, Was this message intended for me? I didn't ever suggest putting Mackenzie through a endo??? Or did I? I think I was talking about Kathy's child and their problems. I think you have to start somewhere and the evidence is in the colon (in this instance). Then go from there. Re: [eosinophilic gastroenteritis] Eosinophil Colitis > >> Date: Tuesday, January 18, 2000 4:52 PM > >> > >> > >> > >> Kathy, > >> > >> A couple of suggestions. First of all, Ross Pharmaceuticals makes a > >product > >> identical to Neocate except MADE IN THE USA AND A LOT CHEAPER. It is > >called > >> Elecare. I would suggest you seek that out as an alternative. > >> > >> I would ask and Beatrix to answer your question about whether or > >not > >> one negative colon biopsy rules out for EC. I think the results can be > >hit > >> and miss and there may be sections that are clear when some are not??? > >Not > >> sure on that one. My kids (5) and I have EE (esophagus only). > >> > >> The one really big, huge, wonderful thing you have in your corner is your > >> son's weight! Hallelujah for that big boy! > >> > >> Most of the kids with eosinophilic diseases don't seem to have a clear > >> hereditary link. Obviously, in my family it is distinctly different but > >we > >> seem to be the exception. > >> > >> I would be very, very careful, however, with relying on skin testing and > >> blood testing for any GI link to allergy. With these eosinophilic > >diseases, > >> there is no proven link, and the docs should KNOW THIS. The foods you > >are > >> giving him with just a few exceptions tend toward the safer less allergic > >> foods. I would be very, very careful re-introducing anything or > >introducing > >> anything. Give it 5-7 days at least before you stop watching for > >symptoms. > >> There isnt much harm in trying it as long as you are prepared to watch > >and > >> take care of any possible consequences, particularly with your doctor's > >> blessing. However, use your mom's common sense as your guide -- I > >strongly > >> believe in mom's intuition on these things. Whatever you do, keep him on > >> Neocate (or Elecare) as long as it takes to figure out exactly what is > >going > >> on. If you take him off it while you try to figure out a diet, you may > >> never be able to get him to take it orally again and end up with G-tubes > >(as > >> my entire family except hubby and one kid now have). > >> > >> Good luck... did I answer everything? > >> > >> Steph. > >> > >> > >> > >> > >> > >> __________________________________________________ > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 Our doc always asks, if Spencer's eos's are high, if he is having symptoms. So I really, really don't think there is a correlation involved there. But really confusing. Re: [eosinophilic gastroenteritis] Eosinophil Colitis > Date: Tuesday, January 18, 2000 2:27 PM > > > > I am new to this list as of about two or so weeks ago. I am now > interested in writing, after getting Anke's letter. I'm still unsure if > I belong on this list or not (my husband signed me up). Maybe you all > could give your input. My fourth child, Luke, is almost 16 months old. > Here is a bit of his history. Luke had horrible eczema, dermatitis > (whatever) from birth and was switched from a milk based formula (I did > not nurse) at the age of 2 months because of his skin problem. He also > would cough a lot while drinking his bottle and occasionally would expel > this clear fluid (if only we knew then what we know now!). So, anyway, > he switched to a soy formula and his skin didn't improve much (or at > all), nothing else SEEMED wrong. At his 5 month check up, my > pediatrician noticed Luke was very pale and did a quick hemoglobin test > on him. The red flags went up immediately because his test showed him > at 8.5. My ped ordered a complete blood test on him since a lack of > iron wouldn't cause such a low blood count. The blood was taken the > next day and my ped called me back with the results that evening and his > hemoglobin was 7.1, and his eosiniphil count was about 19 (I've seen > others write the EOS in terms of thousands, I don't know how to > calculate this - the docs always give it to me in terms of teens, can > anybody tell me what that means?). The next day he was at Children's > Memorial Hospital in Chicago (Thank God) and Hematology ran a blood test > and his hemoglobin was 6.8. All this time I was barely able to speak > (or sleep or eat), as I was gripped with fear like I've never known. I > thought my baby was dying. Hematology ultimately determined it was an > allergy to his formula that was causing intestinal bleeding; his stools > were strongly positive for blood. I guess when the bleeding is > intestinal you can't see the blood in the stools, but when it's in the > colon you can. Am I correct? I never saw any blood in his diapers. He > was put on Neocate formula (tastes AWFUL, but he got used to it). We > were told to avoid all soy and milk products. The only other thing I > suspect Luke may be allergic to is possibly sweet potatoes and turkey. > His hemoglobin bottomed out a few days later to 6.1. Every doctor we > saw said he was a canidate for a transfusion, but since he was so alert > (thank God, again) they didn't want to do it. It was very scary to have > to watch for " signs " of distress. I told my husband it was like being > pregnant for the first time and wondering if you were really going to be > able to recognize having true labor, when you really have no idea what > labor feels like. I didn't sleep because I kept checking him and > listening for him. So, anyway he went on this Neocate and things took a > REALLY LONG TIME to improve. He was put under the care of a > Gastroenterologist at Children's. His ultimate diagnosis was " Cows milk > protien and Soy protien intolerance " . It was labeled an " intolerance " > because his IGE(?) level was normal. He was seen by an allergist at > Childrens and a RAST test (the blood test to test for allergies) was > done on him for allergies to soy, milk, eggs, wheat, and one other thing > (I can't remember) and all came up negative for allergies. The > Gastroenterologist did a colon biopsy on him and told me things looked > good and there was EOS in his colon, and did not seem surprised. She > never mentioned EOS colitis. She told me he had colitis due to his > problem. So now, after listening to all of you talk back and forth, you > don't think it's possible he has this EOS colitis, do you? Surely she > would know, being at CMH in Chicago and being a pediatric Gastro doctor, > right? His EOS at one time got down to 9 and I was very excited, but at > his last big blood test a few months ago, it was up to 18 again. Just > what number is considered a high EOS? Is Luke really not that high > compared to your children? The great news is about 3 weeks ago my ped > tested his hemoglobin and for the first time in almost a year he tested > normal at 11.5. We have been very excited about that. I should note > that Luke has no other problems and is a very healthy, off the chart > sized toddler. He hangs out in the 95% for height and 40% for weight > (just like our 7 year old daughter did - not like mom!). Luke continues > to have his " intolerances " . Whenever we have tried to re-introduce milk > to him he throws up a TON of clear mucous. He continues on the Neocate > (which is VERY expensive and our insurance won't cover a bit of it). > Feeding a child and having to avoid BOTH milk and soy is very > difficult. The first thing we gave him was rice, but it had to be > " Earth's Best " rice, because the Gerber brand has milk derivitives in > it. He loves oatmeal and is not a fan of fruits and vegetables, but I > sneak them in the oatmeal. We buy him lunchmeat (pork, chicken) and he > loves pasta with my husbands homemade meat sauce (beef). Other than > that he can have rice cakes, cheerios, Crispix, marshmellows, homemade > bread (you can't buy harly anything without milk or soy in it!). I am > very open to food suggestions!!! Does anybody have an opinion on Goat's > milk? I gave him 3 oz. of it two days ago and about 1 oz. yesterday and > so far 2 oz. today. I am not YET seeing a reaction. My ped said I > could try soy again, but he had his worst reaction when on the soy > formula. I'm thinking I need some advice from his gastro doc again > before proceeding with trying soy. I KNOW he can't handle milk. The > gastro doc was very confident Luke would outgrow his " intolerances " by > age 2. There are no known cases of allergies or asthma in EITHER my > husbands family or mine ---- where did this come from???? Do you think > it will go away? Do you think he could develop asthma? When does that > usually happen? His skin is really good these days, although we suspect > that MAYBE soy brings on outbreaks. He also saw a dermatologist at > Children's who put him on Zyrtec (what a miracle) and gave him a > corticosteriod cream (also a miracle). We use both only when we HAVE > to. > > I sincerely apologize for writing such a long email. I won't do it > again, but felt I needed to give you some of his background to get these > EOS questions answered. > > Kathy, mommy to (8), (7), (nearly 4), and Luke (16 > mos. on Jan. 20) These children are my treasures and I also want to say > quickly and most sincerely, that when I read what some of you mothers > are going through with your children, my heart really goes out to you. > The immune system is such a big, fat question mark! I have kept you all > in my prayers. > > anke_grunwald@... wrote: > > > > From: anke_grunwald@... > > > > Hi all, > > > > my son n is five and a half months old and suffers from eosinophil colitis > > since he was born in August, 1999. I am still nursing him, however next month > > I should give him additional food. > > Do you have any experience what kind of food is suitable for him? We do not > > get help from our doctor. He has not heard about the desease up to now (we are living > > in Germany), he recommends to " try out " . Is there anybody out there whose baby is in a > > similar situation? > > > > n currently is going pretty well, he is normally gaining height and weight. > > There is very little blood left in his stools, and all symptoms of diarrhoe > > are gone (he now has stool every second day). > > > > While nursing him, I have had a strong diet without milk or milk product, fish, > > egg, nuts, and - since december - porc meat. Without eating porc meat, my > > son is going better while leaving out milk and milk product did not improve > > his situation significantly. > > > > Please, if you have any idea what he can eat in the future, let me know. > > > > Best regards, Anke > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 Kathy, A couple of suggestions. First of all, Ross Pharmaceuticals makes a product identical to Neocate except MADE IN THE USA AND A LOT CHEAPER. It is called Elecare. I would suggest you seek that out as an alternative. I would ask and Beatrix to answer your question about whether or not one negative colon biopsy rules out for EC. I think the results can be hit and miss and there may be sections that are clear when some are not??? Not sure on that one. My kids (5) and I have EE (esophagus only). The one really big, huge, wonderful thing you have in your corner is your son's weight! Hallelujah for that big boy! Most of the kids with eosinophilic diseases don't seem to have a clear hereditary link. Obviously, in my family it is distinctly different but we seem to be the exception. I would be very, very careful, however, with relying on skin testing and blood testing for any GI link to allergy. With these eosinophilic diseases, there is no proven link, and the docs should KNOW THIS. The foods you are giving him with just a few exceptions tend toward the safer less allergic foods. I would be very, very careful re-introducing anything or introducing anything. Give it 5-7 days at least before you stop watching for symptoms. There isnt much harm in trying it as long as you are prepared to watch and take care of any possible consequences, particularly with your doctor's blessing. However, use your mom's common sense as your guide -- I strongly believe in mom's intuition on these things. Whatever you do, keep him on Neocate (or Elecare) as long as it takes to figure out exactly what is going on. If you take him off it while you try to figure out a diet, you may never be able to get him to take it orally again and end up with G-tubes (as my entire family except hubby and one kid now have). Good luck... did I answer everything? Steph. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 I feel like I've spent a day in front of this computer! I am finding all this EOS information very helpful. Especially when you talk of symptoms combined with the EOS levels. Luke really is a comfortable, happy toddler. Even when he drinks milk (when we attempt to re-introduce it) he doesn't even get crabby, he wants to be held because he's nausiated and then, of course, spews this clear mucous, and goes right back to playing. We hardly ever give him Zyrtec or even use the corticosteriod cream for his skin. However, given his last blood test, his EOS is very high. I suppose at some point we should return to CMH and get him checked out. Of course, my main concern when it comes to feeding him is what if he's reacting to something and I don't know it - as was the case when he was on the soy formula. Here is this kid bleeding to death and I was completely unaware! I suppose if we are to try soy again, his stools should be checked regularly, which my ped is always willing to do. He's doing so well I hesitate to change anything. He's 24 pounds, which is about average for 16 month old I suppose. I guess his stools were black back when he was bleeding, but sometimes stools are dark anyway, so that's why I'd be really afraid to judge by looking at them. I wish there was a way I could test them on my own and not have to take samples into the doc. jones5 wrote: > > > > Dakota's eosinophil level has always been 10% which is high and she has > never had a problem. > Dawn > > ---------- > > > > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > > Subject: Re: [eosinophilic gastroenteritis] Eosinophil Colitis > > Date: Tuesday, January 18, 2000 6:36 PM > > > > > > > > YES YOU CAN HAVE ELEVATED BLOOD EOS LEVELS AND NOT HAVE A DISEASE. > Sorry, > > I didnt read that all the way through earlier. > > > > People who are, for example, having a hayfever attack, will have sky-high > > IgE and blood eos levels... > > > > Some people have both elevated with no smptoms of anything. > > > > Steph. > > > > > > Re: [eosinophilic gastroenteritis] Eosinophil Colitis > > > > > > > > > > > > >Steph and , > > > > > >Thanks for your response and so quickly. , didn't you have to run > > >Spencer to the ER? Is he ok? > > > > > >I am going to investigate this Elecare and wish I would have heard about > > >it a year ago - why didn't my doc (the gastro) suggest it? Is it newer > > >than Neocate? My ped had never even heard of Neocate until Luke. I > > >hope it doesn't taste different than Neocate (Luke is happy with > > >Neocate). , why do you and your children have g-tubes? Is it > > >because you can't stand the taste of the formula? Do you have a special > > >formula to drink? Why couldn't a person just eat the foods they don't > > >react to and take a multivitamin? > > > > > >Are LUke's EOS numbers high to you (18)? The allergist completely shook > > >her head about the EOS thing (the " I don't know why they even sent you > > >here " kind of shake). > > > > > >I must have typed the colon biopsy part unclearly. His colon biopsy > > >came up positive for EOS (that was back in March or April of last > > >year). I remember the Gastro doc saying something to me when I > > >expressed my disbelief that an " intolerance " can cause intestinal > > >bleeding, she said there was a real controversy in the medical field > > >just where an intolerance ends and a allergy begins. She told me he > > >would be more likely to outgrow an intolerance than an allergy (this > > >doesn't seem to be the case hearing from Steph, who has normal IgE, > > >right?). Seems to me these allergies and intolerances are about the > > >same thing. Luke's Gastro doc never mentioned an EOS disease, but if > > >his EOS continues to be high should I expect them to do another colon > > >biopsy? Is it at that time he could be diagnosed with an EOS disease? > > >I guess what I'm trying to say or ask is, does anybody ever just have an > > >elevated EOS, but not have a disease? I bet a lot of what I say sounds > > >uneducated to those of you who have studied this so much. Sorry. > > > > > > Allred wrote: > > >> > > >> > > >> > > >> Kathy, > > >> > > >> One more thing......none of this that Spencer has runs in any part of > me > > or > > >> my husbands family. > > >> > > >> Also one negative result from biopsies would indicate that at that > point > > you > > >> either got a good spot in the colon or (by looking at how he is doing > as > > far > > >> as symptoms) that the Neocate is doing what it is supposed to do. > That > > >> would be a good thing as it shows that you probably won't have to go > down > > >> the route of introducing steroids to make it go away (My son has to be > on > > >> them as well as IV nutrition). > > >> > > >> I would suggest trying the Elecare too. I know of a lot of people > that > > have > > >> switched from Neocate to Elecare. > > >> > > >> My son is also on Zyrtec and he has developed very bad asthma. > > >> > > >> > > >> Re: [eosinophilic gastroenteritis] Eosinophil Colitis > > >> > > >> > > > >> > > > >> > Kathy, > > >> > > > >> > A couple of suggestions. First of all, Ross Pharmaceuticals makes a > > >> product > > >> > identical to Neocate except MADE IN THE USA AND A LOT CHEAPER. It is > > >> called > > >> > Elecare. I would suggest you seek that out as an alternative. > > >> > > > >> > I would ask and Beatrix to answer your question about whether > or > > >> not > > >> > one negative colon biopsy rules out for EC. I think the results can > be > > >> hit > > >> > and miss and there may be sections that are clear when some are > not??? > > Not > > >> > sure on that one. My kids (5) and I have EE (esophagus only). > > >> > > > >> > The one really big, huge, wonderful thing you have in your corner is > > your > > >> > son's weight! Hallelujah for that big boy! > > >> > > > >> > Most of the kids with eosinophilic diseases don't seem to have a > clear > > >> > hereditary link. Obviously, in my family it is distinctly different > but > > we > > >> > seem to be the exception. > > >> > > > >> > I would be very, very careful, however, with relying on skin testing > > and > > >> > blood testing for any GI link to allergy. With these eosinophilic > > >> diseases, > > >> > there is no proven link, and the docs should KNOW THIS. The foods > you > > are > > >> > giving him with just a few exceptions tend toward the safer less > > allergic > > >> > foods. I would be very, very careful re-introducing anything or > > >> introducing > > >> > anything. Give it 5-7 days at least before you stop watching for > > >> symptoms. > > >> > There isnt much harm in trying it as long as you are prepared to > watch > > and > > >> > take care of any possible consequences, particularly with your > doctor's > > >> > blessing. However, use your mom's common sense as your guide -- I > > >> strongly > > >> > believe in mom's intuition on these things. Whatever you do, keep > him > > on > > >> > Neocate (or Elecare) as long as it takes to figure out exactly what > is > > >> going > > >> > on. If you take him off it while you try to figure out a diet, you > may > > >> > never be able to get him to take it orally again and end up with > > G-tubes > > >> (as > > >> > my entire family except hubby and one kid now have). > > >> > > > >> > Good luck... did I answer everything? > > >> > > > >> > Steph. > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > __________________________________________________ > > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 Well you did say " " lol.....check! Re: [eosinophilic gastroenteritis] Eosinophil Colitis > >> >> Date: Tuesday, January 18, 2000 4:52 PM > >> >> > >> >> > >> >> > >> >> Kathy, > >> >> > >> >> A couple of suggestions. First of all, Ross Pharmaceuticals makes a > >> >product > >> >> identical to Neocate except MADE IN THE USA AND A LOT CHEAPER. It is > >> >called > >> >> Elecare. I would suggest you seek that out as an alternative. > >> >> > >> >> I would ask and Beatrix to answer your question about whether > or > >> >not > >> >> one negative colon biopsy rules out for EC. I think the results can > be > >> >hit > >> >> and miss and there may be sections that are clear when some are not??? > >> >Not > >> >> sure on that one. My kids (5) and I have EE (esophagus only). > >> >> > >> >> The one really big, huge, wonderful thing you have in your corner is > >your > >> >> son's weight! Hallelujah for that big boy! > >> >> > >> >> Most of the kids with eosinophilic diseases don't seem to have a clear > >> >> hereditary link. Obviously, in my family it is distinctly different > but > >> >we > >> >> seem to be the exception. > >> >> > >> >> I would be very, very careful, however, with relying on skin testing > >and > >> >> blood testing for any GI link to allergy. With these eosinophilic > >> >diseases, > >> >> there is no proven link, and the docs should KNOW THIS. The foods you > >> >are > >> >> giving him with just a few exceptions tend toward the safer less > >allergic > >> >> foods. I would be very, very careful re-introducing anything or > >> >introducing > >> >> anything. Give it 5-7 days at least before you stop watching for > >> >symptoms. > >> >> There isnt much harm in trying it as long as you are prepared to watch > >> >and > >> >> take care of any possible consequences, particularly with your > doctor's > >> >> blessing. However, use your mom's common sense as your guide -- I > >> >strongly > >> >> believe in mom's intuition on these things. Whatever you do, keep him > >on > >> >> Neocate (or Elecare) as long as it takes to figure out exactly what is > >> >going > >> >> on. If you take him off it while you try to figure out a diet, you > may > >> >> never be able to get him to take it orally again and end up with > >G-tubes > >> >(as > >> >> my entire family except hubby and one kid now have). > >> >> > >> >> Good luck... did I answer everything? > >> >> > >> >> Steph. > >> >> > >> >> > >> >> > >> >> > >> >> > >> >> __________________________________________________ > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 You can test the stools on your own, ask your doctor about it. Re: [eosinophilic gastroenteritis] Eosinophil Colitis > > > >> > > > >> > > > > >> > > > > >> > Kathy, > > > >> > > > > >> > A couple of suggestions. First of all, Ross Pharmaceuticals makes a > > > >> product > > > >> > identical to Neocate except MADE IN THE USA AND A LOT CHEAPER. It is > > > >> called > > > >> > Elecare. I would suggest you seek that out as an alternative. > > > >> > > > > >> > I would ask and Beatrix to answer your question about whether > > or > > > >> not > > > >> > one negative colon biopsy rules out for EC. I think the results can > > be > > > >> hit > > > >> > and miss and there may be sections that are clear when some are > > not??? > > > Not > > > >> > sure on that one. My kids (5) and I have EE (esophagus only). > > > >> > > > > >> > The one really big, huge, wonderful thing you have in your corner is > > > your > > > >> > son's weight! Hallelujah for that big boy! > > > >> > > > > >> > Most of the kids with eosinophilic diseases don't seem to have a > > clear > > > >> > hereditary link. Obviously, in my family it is distinctly different > > but > > > we > > > >> > seem to be the exception. > > > >> > > > > >> > I would be very, very careful, however, with relying on skin testing > > > and > > > >> > blood testing for any GI link to allergy. With these eosinophilic > > > >> diseases, > > > >> > there is no proven link, and the docs should KNOW THIS. The foods > > you > > > are > > > >> > giving him with just a few exceptions tend toward the safer less > > > allergic > > > >> > foods. I would be very, very careful re-introducing anything or > > > >> introducing > > > >> > anything. Give it 5-7 days at least before you stop watching for > > > >> symptoms. > > > >> > There isnt much harm in trying it as long as you are prepared to > > watch > > > and > > > >> > take care of any possible consequences, particularly with your > > doctor's > > > >> > blessing. However, use your mom's common sense as your guide -- I > > > >> strongly > > > >> > believe in mom's intuition on these things. Whatever you do, keep > > him > > > on > > > >> > Neocate (or Elecare) as long as it takes to figure out exactly what > > is > > > >> going > > > >> > on. If you take him off it while you try to figure out a diet, you > > may > > > >> > never be able to get him to take it orally again and end up with > > > G-tubes > > > >> (as > > > >> > my entire family except hubby and one kid now have). > > > >> > > > > >> > Good luck... did I answer everything? > > > >> > > > > >> > Steph. > > > >> > > > > >> > > > > >> > > > > >> > > > > >> > > > > >> > __________________________________________________ > > > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 I would love a chunky 24 lb. 16 month old baby!!!! But I love my lil micro squirt anyway! LOL Re: [eosinophilic gastroenteritis] Eosinophil Colitis > > > > >> > > > > >> > > > > > >> > > > > > >> > Kathy, > > > > >> > > > > > >> > A couple of suggestions. First of all, Ross Pharmaceuticals > makes a > > > > >> product > > > > >> > identical to Neocate except MADE IN THE USA AND A LOT CHEAPER. > It is > > > > >> called > > > > >> > Elecare. I would suggest you seek that out as an alternative. > > > > >> > > > > > >> > I would ask and Beatrix to answer your question about > whether > > > or > > > > >> not > > > > >> > one negative colon biopsy rules out for EC. I think the results > can > > > be > > > > >> hit > > > > >> > and miss and there may be sections that are clear when some are > > > not??? > > > > Not > > > > >> > sure on that one. My kids (5) and I have EE (esophagus only). > > > > >> > > > > > >> > The one really big, huge, wonderful thing you have in your > corner is > > > > your > > > > >> > son's weight! Hallelujah for that big boy! > > > > >> > > > > > >> > Most of the kids with eosinophilic diseases don't seem to have a > > > clear > > > > >> > hereditary link. Obviously, in my family it is distinctly > different > > > but > > > > we > > > > >> > seem to be the exception. > > > > >> > > > > > >> > I would be very, very careful, however, with relying on skin > testing > > > > and > > > > >> > blood testing for any GI link to allergy. With these > eosinophilic > > > > >> diseases, > > > > >> > there is no proven link, and the docs should KNOW THIS. The > foods > > > you > > > > are > > > > >> > giving him with just a few exceptions tend toward the safer less > > > > allergic > > > > >> > foods. I would be very, very careful re-introducing anything or > > > > >> introducing > > > > >> > anything. Give it 5-7 days at least before you stop watching > for > > > > >> symptoms. > > > > >> > There isnt much harm in trying it as long as you are prepared to > > > watch > > > > and > > > > >> > take care of any possible consequences, particularly with your > > > doctor's > > > > >> > blessing. However, use your mom's common sense as your guide -- > I > > > > >> strongly > > > > >> > believe in mom's intuition on these things. Whatever you do, > keep > > > him > > > > on > > > > >> > Neocate (or Elecare) as long as it takes to figure out exactly > what > > > is > > > > >> going > > > > >> > on. If you take him off it while you try to figure out a diet, > you > > > may > > > > >> > never be able to get him to take it orally again and end up with > > > > G-tubes > > > > >> (as > > > > >> > my entire family except hubby and one kid now have). > > > > >> > > > > > >> > Good luck... did I answer everything? > > > > >> > > > > > >> > Steph. > > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > > >> > > > > > >> > __________________________________________________ > > > > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 , I have been wondering for a week now, what is " LOL " ? Kathy Allred wrote: > > > > I would love a chunky 24 lb. 16 month old baby!!!! But I love my lil micro > squirt anyway! LOL > > > Re: [eosinophilic gastroenteritis] Eosinophil Colitis > > > > > >> > > > > > >> > > > > > > >> > > > > > > >> > Kathy, > > > > > >> > > > > > > >> > A couple of suggestions. First of all, Ross Pharmaceuticals > > makes a > > > > > >> product > > > > > >> > identical to Neocate except MADE IN THE USA AND A LOT CHEAPER. > > It is > > > > > >> called > > > > > >> > Elecare. I would suggest you seek that out as an alternative. > > > > > >> > > > > > > >> > I would ask and Beatrix to answer your question about > > whether > > > > or > > > > > >> not > > > > > >> > one negative colon biopsy rules out for EC. I think the > results > > can > > > > be > > > > > >> hit > > > > > >> > and miss and there may be sections that are clear when some are > > > > not??? > > > > > Not > > > > > >> > sure on that one. My kids (5) and I have EE (esophagus only). > > > > > >> > > > > > > >> > The one really big, huge, wonderful thing you have in your > > corner is > > > > > your > > > > > >> > son's weight! Hallelujah for that big boy! > > > > > >> > > > > > > >> > Most of the kids with eosinophilic diseases don't seem to have > a > > > > clear > > > > > >> > hereditary link. Obviously, in my family it is distinctly > > different > > > > but > > > > > we > > > > > >> > seem to be the exception. > > > > > >> > > > > > > >> > I would be very, very careful, however, with relying on skin > > testing > > > > > and > > > > > >> > blood testing for any GI link to allergy. With these > > eosinophilic > > > > > >> diseases, > > > > > >> > there is no proven link, and the docs should KNOW THIS. The > > foods > > > > you > > > > > are > > > > > >> > giving him with just a few exceptions tend toward the safer > less > > > > > allergic > > > > > >> > foods. I would be very, very careful re-introducing anything > or > > > > > >> introducing > > > > > >> > anything. Give it 5-7 days at least before you stop watching > > for > > > > > >> symptoms. > > > > > >> > There isnt much harm in trying it as long as you are prepared > to > > > > watch > > > > > and > > > > > >> > take care of any possible consequences, particularly with your > > > > doctor's > > > > > >> > blessing. However, use your mom's common sense as your > guide -- > > I > > > > > >> strongly > > > > > >> > believe in mom's intuition on these things. Whatever you do, > > keep > > > > him > > > > > on > > > > > >> > Neocate (or Elecare) as long as it takes to figure out exactly > > what > > > > is > > > > > >> going > > > > > >> > on. If you take him off it while you try to figure out a diet, > > you > > > > may > > > > > >> > never be able to get him to take it orally again and end up > with > > > > > G-tubes > > > > > >> (as > > > > > >> > my entire family except hubby and one kid now have). > > > > > >> > > > > > > >> > Good luck... did I answer everything? > > > > > >> > > > > > > >> > Steph. > > > > > >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > > > >> > > > > > > >> > __________________________________________________ > > > > > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 , Just remember that there is NO evidence or clinical support of elevated blood eos levels and GI eosinophilic infiltration. They appear to be two very different processes. i would be oh-so-careful putting a young infant through a scope just because of an elevated blood eos level and crabbiness after meals, ESPECIALLY AS SHE IS GROWING SO well, mainly becuase there simply is no harm being done waiting until she is older and the risks decrease. S. Re: [eosinophilic gastroenteritis] Eosinophil Colitis >> Date: Tuesday, January 18, 2000 4:52 PM >> >> >> >> Kathy, >> >> A couple of suggestions. First of all, Ross Pharmaceuticals makes a >product >> identical to Neocate except MADE IN THE USA AND A LOT CHEAPER. It is >called >> Elecare. I would suggest you seek that out as an alternative. >> >> I would ask and Beatrix to answer your question about whether or >not >> one negative colon biopsy rules out for EC. I think the results can be >hit >> and miss and there may be sections that are clear when some are not??? >Not >> sure on that one. My kids (5) and I have EE (esophagus only). >> >> The one really big, huge, wonderful thing you have in your corner is your >> son's weight! Hallelujah for that big boy! >> >> Most of the kids with eosinophilic diseases don't seem to have a clear >> hereditary link. Obviously, in my family it is distinctly different but >we >> seem to be the exception. >> >> I would be very, very careful, however, with relying on skin testing and >> blood testing for any GI link to allergy. With these eosinophilic >diseases, >> there is no proven link, and the docs should KNOW THIS. The foods you >are >> giving him with just a few exceptions tend toward the safer less allergic >> foods. I would be very, very careful re-introducing anything or >introducing >> anything. Give it 5-7 days at least before you stop watching for >symptoms. >> There isnt much harm in trying it as long as you are prepared to watch >and >> take care of any possible consequences, particularly with your doctor's >> blessing. However, use your mom's common sense as your guide -- I >strongly >> believe in mom's intuition on these things. Whatever you do, keep him on >> Neocate (or Elecare) as long as it takes to figure out exactly what is >going >> on. If you take him off it while you try to figure out a diet, you may >> never be able to get him to take it orally again and end up with G-tubes >(as >> my entire family except hubby and one kid now have). >> >> Good luck... did I answer everything? >> >> Steph. >> >> >> >> >> >> __________________________________________________ >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 I have varying blood IgE levels... they can be super-high and normal,depending on many many factors. There is no correlation between my blood IgE levels (and that of all 5 kids with EE) and our GI eosinophilic inflammation. Steph. Re: [eosinophilic gastroenteritis] Eosinophil Colitis > > >Steph and , > >Thanks for your response and so quickly. , didn't you have to run >Spencer to the ER? Is he ok? > >I am going to investigate this Elecare and wish I would have heard about >it a year ago - why didn't my doc (the gastro) suggest it? Is it newer >than Neocate? My ped had never even heard of Neocate until Luke. I >hope it doesn't taste different than Neocate (Luke is happy with >Neocate). , why do you and your children have g-tubes? Is it >because you can't stand the taste of the formula? Do you have a special >formula to drink? Why couldn't a person just eat the foods they don't >react to and take a multivitamin? > >Are LUke's EOS numbers high to you (18)? The allergist completely shook >her head about the EOS thing (the " I don't know why they even sent you >here " kind of shake). > >I must have typed the colon biopsy part unclearly. His colon biopsy >came up positive for EOS (that was back in March or April of last >year). I remember the Gastro doc saying something to me when I >expressed my disbelief that an " intolerance " can cause intestinal >bleeding, she said there was a real controversy in the medical field >just where an intolerance ends and a allergy begins. She told me he >would be more likely to outgrow an intolerance than an allergy (this >doesn't seem to be the case hearing from Steph, who has normal IgE, >right?). Seems to me these allergies and intolerances are about the >same thing. Luke's Gastro doc never mentioned an EOS disease, but if >his EOS continues to be high should I expect them to do another colon >biopsy? Is it at that time he could be diagnosed with an EOS disease? >I guess what I'm trying to say or ask is, does anybody ever just have an >elevated EOS, but not have a disease? I bet a lot of what I say sounds >uneducated to those of you who have studied this so much. Sorry. > > Allred wrote: >> >> >> >> Kathy, >> >> One more thing......none of this that Spencer has runs in any part of me or >> my husbands family. >> >> Also one negative result from biopsies would indicate that at that point you >> either got a good spot in the colon or (by looking at how he is doing as far >> as symptoms) that the Neocate is doing what it is supposed to do. That >> would be a good thing as it shows that you probably won't have to go down >> the route of introducing steroids to make it go away (My son has to be on >> them as well as IV nutrition). >> >> I would suggest trying the Elecare too. I know of a lot of people that have >> switched from Neocate to Elecare. >> >> My son is also on Zyrtec and he has developed very bad asthma. >> >> >> Re: [eosinophilic gastroenteritis] Eosinophil Colitis >> >> > >> > >> > Kathy, >> > >> > A couple of suggestions. First of all, Ross Pharmaceuticals makes a >> product >> > identical to Neocate except MADE IN THE USA AND A LOT CHEAPER. It is >> called >> > Elecare. I would suggest you seek that out as an alternative. >> > >> > I would ask and Beatrix to answer your question about whether or >> not >> > one negative colon biopsy rules out for EC. I think the results can be >> hit >> > and miss and there may be sections that are clear when some are not??? Not >> > sure on that one. My kids (5) and I have EE (esophagus only). >> > >> > The one really big, huge, wonderful thing you have in your corner is your >> > son's weight! Hallelujah for that big boy! >> > >> > Most of the kids with eosinophilic diseases don't seem to have a clear >> > hereditary link. Obviously, in my family it is distinctly different but we >> > seem to be the exception. >> > >> > I would be very, very careful, however, with relying on skin testing and >> > blood testing for any GI link to allergy. With these eosinophilic >> diseases, >> > there is no proven link, and the docs should KNOW THIS. The foods you are >> > giving him with just a few exceptions tend toward the safer less allergic >> > foods. I would be very, very careful re-introducing anything or >> introducing >> > anything. Give it 5-7 days at least before you stop watching for >> symptoms. >> > There isnt much harm in trying it as long as you are prepared to watch and >> > take care of any possible consequences, particularly with your doctor's >> > blessing. However, use your mom's common sense as your guide -- I >> strongly >> > believe in mom's intuition on these things. Whatever you do, keep him on >> > Neocate (or Elecare) as long as it takes to figure out exactly what is >> going >> > on. If you take him off it while you try to figure out a diet, you may >> > never be able to get him to take it orally again and end up with G-tubes >> (as >> > my entire family except hubby and one kid now have). >> > >> > Good luck... did I answer everything? >> > >> > Steph. >> > >> > >> > >> > >> > >> > __________________________________________________ >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 YES YOU CAN HAVE ELEVATED BLOOD EOS LEVELS AND NOT HAVE A DISEASE. Sorry, I didnt read that all the way through earlier. People who are, for example, having a hayfever attack, will have sky-high IgE and blood eos levels... Some people have both elevated with no smptoms of anything. Steph. Re: [eosinophilic gastroenteritis] Eosinophil Colitis > > >Steph and , > >Thanks for your response and so quickly. , didn't you have to run >Spencer to the ER? Is he ok? > >I am going to investigate this Elecare and wish I would have heard about >it a year ago - why didn't my doc (the gastro) suggest it? Is it newer >than Neocate? My ped had never even heard of Neocate until Luke. I >hope it doesn't taste different than Neocate (Luke is happy with >Neocate). , why do you and your children have g-tubes? Is it >because you can't stand the taste of the formula? Do you have a special >formula to drink? Why couldn't a person just eat the foods they don't >react to and take a multivitamin? > >Are LUke's EOS numbers high to you (18)? The allergist completely shook >her head about the EOS thing (the " I don't know why they even sent you >here " kind of shake). > >I must have typed the colon biopsy part unclearly. His colon biopsy >came up positive for EOS (that was back in March or April of last >year). I remember the Gastro doc saying something to me when I >expressed my disbelief that an " intolerance " can cause intestinal >bleeding, she said there was a real controversy in the medical field >just where an intolerance ends and a allergy begins. She told me he >would be more likely to outgrow an intolerance than an allergy (this >doesn't seem to be the case hearing from Steph, who has normal IgE, >right?). Seems to me these allergies and intolerances are about the >same thing. Luke's Gastro doc never mentioned an EOS disease, but if >his EOS continues to be high should I expect them to do another colon >biopsy? Is it at that time he could be diagnosed with an EOS disease? >I guess what I'm trying to say or ask is, does anybody ever just have an >elevated EOS, but not have a disease? I bet a lot of what I say sounds >uneducated to those of you who have studied this so much. Sorry. > > Allred wrote: >> >> >> >> Kathy, >> >> One more thing......none of this that Spencer has runs in any part of me or >> my husbands family. >> >> Also one negative result from biopsies would indicate that at that point you >> either got a good spot in the colon or (by looking at how he is doing as far >> as symptoms) that the Neocate is doing what it is supposed to do. That >> would be a good thing as it shows that you probably won't have to go down >> the route of introducing steroids to make it go away (My son has to be on >> them as well as IV nutrition). >> >> I would suggest trying the Elecare too. I know of a lot of people that have >> switched from Neocate to Elecare. >> >> My son is also on Zyrtec and he has developed very bad asthma. >> >> >> Re: [eosinophilic gastroenteritis] Eosinophil Colitis >> >> > >> > >> > Kathy, >> > >> > A couple of suggestions. First of all, Ross Pharmaceuticals makes a >> product >> > identical to Neocate except MADE IN THE USA AND A LOT CHEAPER. It is >> called >> > Elecare. I would suggest you seek that out as an alternative. >> > >> > I would ask and Beatrix to answer your question about whether or >> not >> > one negative colon biopsy rules out for EC. I think the results can be >> hit >> > and miss and there may be sections that are clear when some are not??? Not >> > sure on that one. My kids (5) and I have EE (esophagus only). >> > >> > The one really big, huge, wonderful thing you have in your corner is your >> > son's weight! Hallelujah for that big boy! >> > >> > Most of the kids with eosinophilic diseases don't seem to have a clear >> > hereditary link. Obviously, in my family it is distinctly different but we >> > seem to be the exception. >> > >> > I would be very, very careful, however, with relying on skin testing and >> > blood testing for any GI link to allergy. With these eosinophilic >> diseases, >> > there is no proven link, and the docs should KNOW THIS. The foods you are >> > giving him with just a few exceptions tend toward the safer less allergic >> > foods. I would be very, very careful re-introducing anything or >> introducing >> > anything. Give it 5-7 days at least before you stop watching for >> symptoms. >> > There isnt much harm in trying it as long as you are prepared to watch and >> > take care of any possible consequences, particularly with your doctor's >> > blessing. However, use your mom's common sense as your guide -- I >> strongly >> > believe in mom's intuition on these things. Whatever you do, keep him on >> > Neocate (or Elecare) as long as it takes to figure out exactly what is >> going >> > on. If you take him off it while you try to figure out a diet, you may >> > never be able to get him to take it orally again and end up with G-tubes >> (as >> > my entire family except hubby and one kid now have). >> > >> > Good luck... did I answer everything? >> > >> > Steph. >> > >> > >> > >> > >> > >> > __________________________________________________ >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 Judy, Back when were trying to find a correlation between blood eos levels and anything in the GI tract, we also did separate absolute eos levels. After a year on all 6 of us, there was no consistent correlation found between the two. Steph. Re: [eosinophilic gastroenteritis] Eosinophil Colitis If the number that they are giving you is a percentage, you can multiply that by the total white count to get the eosinophil count. Here on the standard CBC with diff it is given in percentages, with 0-6 being normal. The problem as I understand it is that depending on the white count the percentage can be misleading. My allergist insists that they do an absolute count and on that 0-450 is considered normal.... Judy Re: [eosinophilic gastroenteritis] Eosinophil Colitis > Date: Tuesday, January 18, 2000 2:27 PM > > > > I am new to this list as of about two or so weeks ago. I am now > interested in writing, after getting Anke's letter. I'm still unsure if > I belong on this list or not (my husband signed me up). Maybe you all > could give your input. My fourth child, Luke, is almost 16 months old. > Here is a bit of his history. Luke had horrible eczema, dermatitis > (whatever) from birth and was switched from a milk based formula (I did > not nurse) at the age of 2 months because of his skin problem. He also > would cough a lot while drinking his bottle and occasionally would expel > this clear fluid (if only we knew then what we know now!). So, anyway, > he switched to a soy formula and his skin didn't improve much (or at > all), nothing else SEEMED wrong. At his 5 month check up, my > pediatrician noticed Luke was very pale and did a quick hemoglobin test > on him. The red flags went up immediately because his test showed him > at 8.5. My ped ordered a complete blood test on him since a lack of > iron wouldn't cause such a low blood count. The blood was taken the > next day and my ped called me back with the results that evening and his > hemoglobin was 7.1, and his eosiniphil count was about 19 (I've seen > others write the EOS in terms of thousands, I don't know how to > calculate this - the docs always give it to me in terms of teens, can > anybody tell me what that means?). The next day he was at Children's > Memorial Hospital in Chicago (Thank God) and Hematology ran a blood test > and his hemoglobin was 6.8. All this time I was barely able to speak > (or sleep or eat), as I was gripped with fear like I've never known. I > thought my baby was dying. Hematology ultimately determined it was an > allergy to his formula that was causing intestinal bleeding; his stools > were strongly positive for blood. I guess when the bleeding is > intestinal you can't see the blood in the stools, but when it's in the > colon you can. Am I correct? I never saw any blood in his diapers. He > was put on Neocate formula (tastes AWFUL, but he got used to it). We > were told to avoid all soy and milk products. The only other thing I > suspect Luke may be allergic to is possibly sweet potatoes and turkey. > His hemoglobin bottomed out a few days later to 6.1. Every doctor we > saw said he was a canidate for a transfusion, but since he was so alert > (thank God, again) they didn't want to do it. It was very scary to have > to watch for " signs " of distress. I told my husband it was like being > pregnant for the first time and wondering if you were really going to be > able to recognize having true labor, when you really have no idea what > labor feels like. I didn't sleep because I kept checking him and > listening for him. So, anyway he went on this Neocate and things took a > REALLY LONG TIME to improve. He was put under the care of a > Gastroenterologist at Children's. His ultimate diagnosis was " Cows milk > protien and Soy protien intolerance " . It was labeled an " intolerance " > because his IGE(?) level was normal. He was seen by an allergist at > Childrens and a RAST test (the blood test to test for allergies) was > done on him for allergies to soy, milk, eggs, wheat, and one other thing > (I can't remember) and all came up negative for allergies. The > Gastroenterologist did a colon biopsy on him and told me things looked > good and there was EOS in his colon, and did not seem surprised. She > never mentioned EOS colitis. She told me he had colitis due to his > problem. So now, after listening to all of you talk back and forth, you > don't think it's possible he has this EOS colitis, do you? Surely she > would know, being at CMH in Chicago and being a pediatric Gastro doctor, > right? His EOS at one time got down to 9 and I was very excited, but at > his last big blood test a few months ago, it was up to 18 again. Just > what number is considered a high EOS? Is Luke really not that high > compared to your children? The great news is about 3 weeks ago my ped > tested his hemoglobin and for the first time in almost a year he tested > normal at 11.5. We have been very excited about that. I should note > that Luke has no other problems and is a very healthy, off the chart > sized toddler. He hangs out in the 95% for height and 40% for weight > (just like our 7 year old daughter did - not like mom!). Luke continues > to have his " intolerances " . Whenever we have tried to re-introduce milk > to him he throws up a TON of clear mucous. He continues on the Neocate > (which is VERY expensive and our insurance won't cover a bit of it). > Feeding a child and having to avoid BOTH milk and soy is very > difficult. The first thing we gave him was rice, but it had to be > " Earth's Best " rice, because the Gerber brand has milk derivitives in > it. He loves oatmeal and is not a fan of fruits and vegetables, but I > sneak them in the oatmeal. We buy him lunchmeat (pork, chicken) and he > loves pasta with my husbands homemade meat sauce (beef). Other than > that he can have rice cakes, cheerios, Crispix, marshmellows, homemade > bread (you can't buy harly anything without milk or soy in it!). I am > very open to food suggestions!!! Does anybody have an opinion on Goat's > milk? I gave him 3 oz. of it two days ago and about 1 oz. yesterday and > so far 2 oz. today. I am not YET seeing a reaction. My ped said I > could try soy again, but he had his worst reaction when on the soy > formula. I'm thinking I need some advice from his gastro doc again > before proceeding with trying soy. I KNOW he can't handle milk. The > gastro doc was very confident Luke would outgrow his " intolerances " by > age 2. There are no known cases of allergies or asthma in EITHER my > husbands family or mine ---- where did this come from???? Do you think > it will go away? Do you think he could develop asthma? When does that > usually happen? His skin is really good these days, although we suspect > that MAYBE soy brings on outbreaks. He also saw a dermatologist at > Children's who put him on Zyrtec (what a miracle) and gave him a > corticosteriod cream (also a miracle). We use both only when we HAVE > to. > > I sincerely apologize for writing such a long email. I won't do it > again, but felt I needed to give you some of his background to get these > EOS questions answered. > > Kathy, mommy to (8), (7), (nearly 4), and Luke (16 > mos. on Jan. 20) These children are my treasures and I also want to say > quickly and most sincerely, that when I read what some of you mothers > are going through with your children, my heart really goes out to you. > The immune system is such a big, fat question mark! I have kept you all > in my prayers. > > anke_grunwald@... wrote: > > > > From: anke_grunwald@... > > > > Hi all, > > > > my son n is five and a half months old and suffers from eosinophil colitis > > since he was born in August, 1999. I am still nursing him, however next month > > I should give him additional food. > > Do you have any experience what kind of food is suitable for him? We do not > > get help from our doctor. He has not heard about the desease up to now (we are living > > in Germany), he recommends to " try out " . Is there anybody out there whose baby is in a > > similar situation? > > > > n currently is going pretty well, he is normally gaining height and weight. > > There is very little blood left in his stools, and all symptoms of diarrhoe > > are gone (he now has stool every second day). > > > > While nursing him, I have had a strong diet without milk or milk product, fish, > > egg, nuts, and - since december - porc meat. Without eating porc meat, my > > son is going better while leaving out milk and milk product did not improve > > his situation significantly. > > > > Please, if you have any idea what he can eat in the future, let me know. > > > > Best regards, Anke > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 Kathy! It's " Laughing out Loud " ! I have to laugh b/c my dad thought it ment " Lots of Luck " ! hehe Re: [eosinophilic gastroenteritis] Eosinophil Colitis > > > > > > >> > > > > > > >> > > > > > > > >> > > > > > > > >> > Kathy, > > > > > > >> > > > > > > > >> > A couple of suggestions. First of all, Ross Pharmaceuticals > > > makes a > > > > > > >> product > > > > > > >> > identical to Neocate except MADE IN THE USA AND A LOT CHEAPER. > > > It is > > > > > > >> called > > > > > > >> > Elecare. I would suggest you seek that out as an alternative. > > > > > > >> > > > > > > > >> > I would ask and Beatrix to answer your question about > > > whether > > > > > or > > > > > > >> not > > > > > > >> > one negative colon biopsy rules out for EC. I think the > > results > > > can > > > > > be > > > > > > >> hit > > > > > > >> > and miss and there may be sections that are clear when some are > > > > > not??? > > > > > > Not > > > > > > >> > sure on that one. My kids (5) and I have EE (esophagus only). > > > > > > >> > > > > > > > >> > The one really big, huge, wonderful thing you have in your > > > corner is > > > > > > your > > > > > > >> > son's weight! Hallelujah for that big boy! > > > > > > >> > > > > > > > >> > Most of the kids with eosinophilic diseases don't seem to have > > a > > > > > clear > > > > > > >> > hereditary link. Obviously, in my family it is distinctly > > > different > > > > > but > > > > > > we > > > > > > >> > seem to be the exception. > > > > > > >> > > > > > > > >> > I would be very, very careful, however, with relying on skin > > > testing > > > > > > and > > > > > > >> > blood testing for any GI link to allergy. With these > > > eosinophilic > > > > > > >> diseases, > > > > > > >> > there is no proven link, and the docs should KNOW THIS. The > > > foods > > > > > you > > > > > > are > > > > > > >> > giving him with just a few exceptions tend toward the safer > > less > > > > > > allergic > > > > > > >> > foods. I would be very, very careful re-introducing anything > > or > > > > > > >> introducing > > > > > > >> > anything. Give it 5-7 days at least before you stop watching > > > for > > > > > > >> symptoms. > > > > > > >> > There isnt much harm in trying it as long as you are prepared > > to > > > > > watch > > > > > > and > > > > > > >> > take care of any possible consequences, particularly with your > > > > > doctor's > > > > > > >> > blessing. However, use your mom's common sense as your > > guide -- > > > I > > > > > > >> strongly > > > > > > >> > believe in mom's intuition on these things. Whatever you do, > > > keep > > > > > him > > > > > > on > > > > > > >> > Neocate (or Elecare) as long as it takes to figure out exactly > > > what > > > > > is > > > > > > >> going > > > > > > >> > on. If you take him off it while you try to figure out a diet, > > > you > > > > > may > > > > > > >> > never be able to get him to take it orally again and end up > > with > > > > > > G-tubes > > > > > > >> (as > > > > > > >> > my entire family except hubby and one kid now have). > > > > > > >> > > > > > > > >> > Good luck... did I answer everything? > > > > > > >> > > > > > > > >> > Steph. > > > > > > >> > > > > > > > >> > > > > > > > >> > > > > > > > >> > > > > > > > >> > > > > > > > >> > __________________________________________________ > > > > > > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 Steph, Since you know so much about this disease.....I was wondering, how can someone with ton's of eos's and inflammation NOT be diagnosed with EE/EG or EC????? I am really confused! Re: [eosinophilic gastroenteritis] Eosinophil Colitis > From: C4HURT@... > > Hi Kathy -- > > First, let me welcome you to the list and say hello. My daughter is > in a very similar situation like your sons. She has been on g-tube feedings > since she was 9 months old due to complete oral aversions and FTT (failure to > thrive). She has been on an elemental diet since March of last year and has > done better with the use of Neocate than anything else we have tried. > > When she was finally biopsied in Sept. of last year they found an ulcer in > her stomach and severe/chronic intestinal inflamation through out her entire > gut with the primary problem being high levels of EOS cells We started using > Prevacid then and took her to a complete elemental diet with absolutely no > attempts with oral feedings. We have gradually introduced foods to test them > with her to see if she has any type of reaction. So far she has been okay > with rice, oats, beef, turkey, chicken, most vegetables except legumes and > most fruits except berries and citrus. > > We do not have a diagnosis of EE, EG or EC but after being a part of this > list and listening to many well informed members it is my gut feeling that we > are dealing with some type of EOS disease and that if she were not on an > elemental diet we would have many other MAJOR problems that we would be > having to deal with. > > << It was labeled an " intolerance " because his IGE(?) level was normal. He > was seen by an allergist at Childrens and a RAST test (the blood test to test > for allergies) was done on him for allergies to soy, milk, eggs, wheat, and > one other thing > (I can't remember) and all came up negative for allergies.>> > > This is very interesting that you wrote this because this is exactly what > has been subjected to over the past several months. All of the > allergy testing we have had done on her have all come up negative as well. > They keep telling me that it is an " intolerance " and that she will outgrow > all of this. I'm keeping my fingers crossed but am still quite skeptical. I > really don't want to see her develop more symptoms just so that they can > diagnose something that much easier. It has been a very hard process to get > her to put on weight and I feel that the successes we have had would be > undone (in a heartbeat) if I didn't have her on an elemental diet. > > Just wanted you to know that there is someone else out here on this list that > is in similar circumstances. Sorry I can't help answer many of your > questions but maybe if we both keeping asking we'll be able to get to the > bottom of all of this for our situations. Hang in there. Take care. > > Cindy -- in Colorado > Mommy to 6, 5 and (22 months, FTT, 100% g-tube fed with > Neocate, undiagnosed chronic intestinal inflammation, severe food allergies, > SID, hypotonia, but getting cuter all the time!) > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 No silly, not for you. Steph. Re: [eosinophilic gastroenteritis] Eosinophil Colitis > > >Steph, > >Was this message intended for me? I didn't ever suggest putting Mackenzie >through a endo??? Or did I? I think I was talking about Kathy's child and >their problems. I think you have to start somewhere and the evidence is in >the colon (in this instance). Then go from there. > > > Re: [eosinophilic gastroenteritis] Eosinophil Colitis >> >> Date: Tuesday, January 18, 2000 4:52 PM >> >> >> >> >> >> >> >> Kathy, >> >> >> >> A couple of suggestions. First of all, Ross Pharmaceuticals makes a >> >product >> >> identical to Neocate except MADE IN THE USA AND A LOT CHEAPER. It is >> >called >> >> Elecare. I would suggest you seek that out as an alternative. >> >> >> >> I would ask and Beatrix to answer your question about whether or >> >not >> >> one negative colon biopsy rules out for EC. I think the results can be >> >hit >> >> and miss and there may be sections that are clear when some are not??? >> >Not >> >> sure on that one. My kids (5) and I have EE (esophagus only). >> >> >> >> The one really big, huge, wonderful thing you have in your corner is >your >> >> son's weight! Hallelujah for that big boy! >> >> >> >> Most of the kids with eosinophilic diseases don't seem to have a clear >> >> hereditary link. Obviously, in my family it is distinctly different but >> >we >> >> seem to be the exception. >> >> >> >> I would be very, very careful, however, with relying on skin testing >and >> >> blood testing for any GI link to allergy. With these eosinophilic >> >diseases, >> >> there is no proven link, and the docs should KNOW THIS. The foods you >> >are >> >> giving him with just a few exceptions tend toward the safer less >allergic >> >> foods. I would be very, very careful re-introducing anything or >> >introducing >> >> anything. Give it 5-7 days at least before you stop watching for >> >symptoms. >> >> There isnt much harm in trying it as long as you are prepared to watch >> >and >> >> take care of any possible consequences, particularly with your doctor's >> >> blessing. However, use your mom's common sense as your guide -- I >> >strongly >> >> believe in mom's intuition on these things. Whatever you do, keep him >on >> >> Neocate (or Elecare) as long as it takes to figure out exactly what is >> >going >> >> on. If you take him off it while you try to figure out a diet, you may >> >> never be able to get him to take it orally again and end up with >G-tubes >> >(as >> >> my entire family except hubby and one kid now have). >> >> >> >> Good luck... did I answer everything? >> >> >> >> Steph. >> >> >> >> >> >> >> >> >> >> >> >> __________________________________________________ >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 Hi there; The hospital gave me an occult test kit with 200 slides several years ago. All you do is put the sample in wait a few minutes Turn it around add two drops of solution and Bingo you have your answere. In our case the positive blue is starting to really tick me off Beatrix mom to 7 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 Steph, I can see if the esophagus is inflamed, but the entire GI tract??? That baffles me! But I do agree with you on which doc's and hospitals can really deal with this disease and are up on the latest. You know Dr. Putnam is going to put Spencer on Budesonide (From Canada, not FDA approved nor available in the U.S.) But he is up on how it affects the GI tract. I think it is great! Re: [eosinophilic gastroenteritis] Eosinophil Colitis > > > > > >> From: C4HURT@... > >> > >> Hi Kathy -- > >> > >> First, let me welcome you to the list and say hello. My daughter > >is > >> in a very similar situation like your sons. She has been on g-tube > >feedings > >> since she was 9 months old due to complete oral aversions and FTT > (failure > >to > >> thrive). She has been on an elemental diet since March of last year and > >has > >> done better with the use of Neocate than anything else we have tried. > >> > >> When she was finally biopsied in Sept. of last year they found an ulcer > in > >> her stomach and severe/chronic intestinal inflamation through out her > >entire > >> gut with the primary problem being high levels of EOS cells We started > >using > >> Prevacid then and took her to a complete elemental diet with absolutely > no > >> attempts with oral feedings. We have gradually introduced foods to test > >them > >> with her to see if she has any type of reaction. So far she has been > okay > >> with rice, oats, beef, turkey, chicken, most vegetables except legumes > and > >> most fruits except berries and citrus. > >> > >> We do not have a diagnosis of EE, EG or EC but after being a part of this > >> list and listening to many well informed members it is my gut feeling > that > >we > >> are dealing with some type of EOS disease and that if she were not on an > >> elemental diet we would have many other MAJOR problems that we would be > >> having to deal with. > >> > >> << It was labeled an " intolerance " because his IGE(?) level was normal. > >He > >> was seen by an allergist at Childrens and a RAST test (the blood test to > >test > >> for allergies) was done on him for allergies to soy, milk, eggs, wheat, > >and > >> one other thing > >> (I can't remember) and all came up negative for allergies.>> > >> > >> This is very interesting that you wrote this because this is exactly what > >> has been subjected to over the past several months. All of the > >> allergy testing we have had done on her have all come up negative as > well. > >> They keep telling me that it is an " intolerance " and that she will > outgrow > >> all of this. I'm keeping my fingers crossed but am still quite > skeptical. > >I > >> really don't want to see her develop more symptoms just so that they can > >> diagnose something that much easier. It has been a very hard process to > >get > >> her to put on weight and I feel that the successes we have had would be > >> undone (in a heartbeat) if I didn't have her on an elemental diet. > >> > >> Just wanted you to know that there is someone else out here on this list > >that > >> is in similar circumstances. Sorry I can't help answer many of your > >> questions but maybe if we both keeping asking we'll be able to get to the > >> bottom of all of this for our situations. Hang in there. Take care. > >> > >> Cindy -- in Colorado > >> Mommy to 6, 5 and (22 months, FTT, 100% g-tube fed > >with > >> Neocate, undiagnosed chronic intestinal inflammation, severe food > >allergies, > >> SID, hypotonia, but getting cuter all the time!) > >> > >> --------------------------- ONElist Sponsor ---------------------------- > >> > >> The Mental Health Practitioner's Instant Resource Library for $5.99! > >> This concise 4-book set is a time-saving aid for basic clinical tasks. > >> (a $139.35 value) Order NOW at Behavioral Science Book Service. > >> http://clickme.onelist.com/ad/dblselect1 " >Click Here > >> > >> ------------------------------------------------------------------------ > >> > > > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 Good to know since my husband and I want so badly to move back to Utah where all our family is for support. The closest hospital was Jewish Children's that we had heard of other than the horrid Primary Children's in Salt Lake City!!! Re: [eosinophilic gastroenteritis] Eosinophil Colitis > From: C4HURT@... > > In a message dated 1/18/00 6:23:02 PM Mountain Standard Time, > harlowsteph@... writes: > > << The only other place might be Jewish Childrens in Colorado. >> > > > Except in 's case ;o(. She has been seen there and they are the ones > who are MOST convinced that she will outgrow all of this. They think we > should just check her stools for blood and begin introducing all types of > food and then just watch for the blood to show up in her stools. Even our > ped. doesn't really think that is a wise thing to do! > > > Just thought you'd like to know. > > Cindy -- in Colorado > > Mommy to 6, 5 and (22 months, FTT, 100% g-tube fed with > Neocate, undiagnosed chronic intestinal inflammation, severe food allergies, > SID, hypotonia, but getting cuter all the time!) > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 Hey Bea, I think everything at this point in your life would tick me off!!! I congratulate you on staying as sane as you have!!! BTW: I icq you sometimes and guess who it is online??? Some of your cutie pies!!! I hope they have given you messages.....just to say Hi. Re: [eosinophilic gastroenteritis] Eosinophil Colitis > > > Hi there; > The hospital gave me an occult test kit with 200 slides several years ago. > All you do is put the sample in wait a few minutes Turn it around add two > drops of solution and Bingo you have your answere. In our case the positive > blue is starting to really tick me off > Beatrix mom to 7 > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 As you know , severe reflux can cause tremendous eosinophil levels in biopsies... Many things can cause eos in the blood... many things can cause inflammation. There are a couple of kids on this list who have not been diagnosed, though, and have all the hallmark symptoms. I think the docs there just dont know much about the disease (like anyone does!).. and are afraid to make a " diagnosis of exclusion " that so often the eos' diseases are. I still think if they spent a few days reading through the posts on these kinds of list groups, they would learn a thing or two... Still, I rely on the docs who see the largest number of patients with the disease, e.g. in Philly; and I would also trust the docs there in Cinci too who seem to have a lot of information too. The only other place might be Jewish Childrens in Colorado. I did not trust the diagnosis when first made in our house (x6!).. probably denial on my part, psychologically to deal with it all. I went to several different docs, including before I accepted it. It made it easier to accept when the treatment outlined worked too. Steph. Re: [eosinophilic gastroenteritis] Eosinophil Colitis > > >Steph, > >Since you know so much about this disease.....I was wondering, how can >someone with ton's of eos's and inflammation NOT be diagnosed with EE/EG or >EC????? I am really confused! > > > Re: [eosinophilic gastroenteritis] Eosinophil Colitis > > >> From: C4HURT@... >> >> Hi Kathy -- >> >> First, let me welcome you to the list and say hello. My daughter >is >> in a very similar situation like your sons. She has been on g-tube >feedings >> since she was 9 months old due to complete oral aversions and FTT (failure >to >> thrive). She has been on an elemental diet since March of last year and >has >> done better with the use of Neocate than anything else we have tried. >> >> When she was finally biopsied in Sept. of last year they found an ulcer in >> her stomach and severe/chronic intestinal inflamation through out her >entire >> gut with the primary problem being high levels of EOS cells We started >using >> Prevacid then and took her to a complete elemental diet with absolutely no >> attempts with oral feedings. We have gradually introduced foods to test >them >> with her to see if she has any type of reaction. So far she has been okay >> with rice, oats, beef, turkey, chicken, most vegetables except legumes and >> most fruits except berries and citrus. >> >> We do not have a diagnosis of EE, EG or EC but after being a part of this >> list and listening to many well informed members it is my gut feeling that >we >> are dealing with some type of EOS disease and that if she were not on an >> elemental diet we would have many other MAJOR problems that we would be >> having to deal with. >> >> << It was labeled an " intolerance " because his IGE(?) level was normal. >He >> was seen by an allergist at Childrens and a RAST test (the blood test to >test >> for allergies) was done on him for allergies to soy, milk, eggs, wheat, >and >> one other thing >> (I can't remember) and all came up negative for allergies.>> >> >> This is very interesting that you wrote this because this is exactly what >> has been subjected to over the past several months. All of the >> allergy testing we have had done on her have all come up negative as well. >> They keep telling me that it is an " intolerance " and that she will outgrow >> all of this. I'm keeping my fingers crossed but am still quite skeptical. >I >> really don't want to see her develop more symptoms just so that they can >> diagnose something that much easier. It has been a very hard process to >get >> her to put on weight and I feel that the successes we have had would be >> undone (in a heartbeat) if I didn't have her on an elemental diet. >> >> Just wanted you to know that there is someone else out here on this list >that >> is in similar circumstances. Sorry I can't help answer many of your >> questions but maybe if we both keeping asking we'll be able to get to the >> bottom of all of this for our situations. Hang in there. Take care. >> >> Cindy -- in Colorado >> Mommy to 6, 5 and (22 months, FTT, 100% g-tube fed >with >> Neocate, undiagnosed chronic intestinal inflammation, severe food >allergies, >> SID, hypotonia, but getting cuter all the time!) >> >> --------------------------- Quote Link to comment Share on other sites More sharing options...
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