Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 Dawn, I am so sorry you are having so many problems. Wish I had some answers for you. Glad you are home. Do you have a new plan or did they just leave you hanging? I do know there are other things that can cause Peripheral eosinophilia. Just don't know what they are. When they did the scope, was it an upper endoscopy? Did they do a colonoscopy also? Have you talked to your Allergist? Maybe he will have some answers. I hope they can find the answers you need soon.. Judy [eosinophilic gastroenteritis] OH MY GOD! Well I don't even know where to begin. We got to the hospital on Wednesday and they put BJ on TPN. The GI doctor on call came in and went through the plan with me which was to give him a few days of bowel rest with TPN and then to figure out which formula to put him on and place an ng tube. Well this is what we found out Friday morning. In August when we had BJ scoped, they gave us the wrong results. His results were completely normal and clean of eosinophils. We were told that the results were bad and that they showed eosinophils all over hence our GI doctor (who was not the one on call this time) prescribing Gastrocrom, Prednisone and the Neocate. Never mind the fact that we hadn't fed our son in 3 weeks, only letting him drink the Neocate when it wasn't necessary. So, we ruined his teeth for no reason. The doctors there agreed with our dentist that the Neocate had done this to BJ's teeth mostly because of the fact that every time he takes a drink, he holds it in his mouth for minutes before swallowing it. I just can't even describe how MAD I was. The hospital is launching an investigation into what happened. I signed BJ out of the hospital. NOW, not only do we not know what is wrong with BJ now (The on call GI doctor was very concerned by his stools and undigested food in them) but we put our kid through HELL for no reason. His eos count in his blood is still very high. What does that mean if there are no eosinophils in his scope? Dawn-KS, mommy to Dakota, 7 and aka BJ, 3 (eosinophilic gastroenteritis, Nissen, asthma, reflux), and mommy to Mackenzie Marie (due December 24) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 I just took him out of there Judy. I was so upset. I guess we are going to be looking for a new doctor. They did both an endoscopy and a colonscopy. I haven't talked to our allergist, maybe I will call and make an appointment with him on Monday. Dawn-KS, mommy to Dakota, 7 and aka BJ, 3 (eosinophilic gastroenteritis, Nissen, asthma, reflux), and mommy to Mackenzie Marie (due December 24) [eosinophilic gastroenteritis] OH MY GOD! Well I don't even know where to begin. We got to the hospital on Wednesday and they put BJ on TPN. The GI doctor on call came in and went through the plan with me which was to give him a few days of bowel rest with TPN and then to figure out which formula to put him on and place an ng tube. Well this is what we found out Friday morning. In August when we had BJ scoped, they gave us the wrong results. His results were completely normal and clean of eosinophils. We were told that the results were bad and that they showed eosinophils all over hence our GI doctor (who was not the one on call this time) prescribing Gastrocrom, Prednisone and the Neocate. Never mind the fact that we hadn't fed our son in 3 weeks, only letting him drink the Neocate when it wasn't necessary. So, we ruined his teeth for no reason. The doctors there agreed with our dentist that the Neocate had done this to BJ's teeth mostly because of the fact that every time he takes a drink, he holds it in his mouth for minutes before swallowing it. I just can't even describe how MAD I was. The hospital is launching an investigation into what happened. I signed BJ out of the hospital. NOW, not only do we not know what is wrong with BJ now (The on call GI doctor was very concerned by his stools and undigested food in them) but we put our kid through HELL for no reason. His eos count in his blood is still very high. What does that mean if there are no eosinophils in his scope? Dawn-KS, mommy to Dakota, 7 and aka BJ, 3 (eosinophilic gastroenteritis, Nissen, asthma, reflux), and mommy to Mackenzie Marie (due December 24) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 I sure can't blame you for being upset. It is even harder when it is our children who are involved, than when it is us. They can't tell us where it hurts as well as we know with ourselves. Is he feeling okay? Tell him I said Hi. Hopefully the allergist can find some answers. Maybe he could refer you to a GI that he can consult with. For me that has been a good arrangement. Since this disease isn't clear cut between the specialties it is really difficult. Are you back in bed? How is your hydration? JUDY (ADULT GE) [eosinophilic gastroenteritis] OH MY GOD! Well I don't even know where to begin. We got to the hospital on Wednesday and they put BJ on TPN. The GI doctor on call came in and went through the plan with me which was to give him a few days of bowel rest with TPN and then to figure out which formula to put him on and place an ng tube. Well this is what we found out Friday morning. In August when we had BJ scoped, they gave us the wrong results. His results were completely normal and clean of eosinophils. We were told that the results were bad and that they showed eosinophils all over hence our GI doctor (who was not the one on call this time) prescribing Gastrocrom, Prednisone and the Neocate. Never mind the fact that we hadn't fed our son in 3 weeks, only letting him drink the Neocate when it wasn't necessary. So, we ruined his teeth for no reason. The doctors there agreed with our dentist that the Neocate had done this to BJ's teeth mostly because of the fact that every time he takes a drink, he holds it in his mouth for minutes before swallowing it. I just can't even describe how MAD I was. The hospital is launching an investigation into what happened. I signed BJ out of the hospital. NOW, not only do we not know what is wrong with BJ now (The on call GI doctor was very concerned by his stools and undigested food in them) but we put our kid through HELL for no reason. His eos count in his blood is still very high. What does that mean if there are no eosinophils in his scope? Dawn-KS, mommy to Dakota, 7 and aka BJ, 3 (eosinophilic gastroenteritis, Nissen, asthma, reflux), and mommy to Mackenzie Marie (due December 24) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 In a message dated 10/9/99 12:44:12 PM Pacific Daylight Time, supplyguy@... writes: << I just can't even describe how MAD I was. The hospital is launching an investigation into what happened. I signed BJ out of the hospital. NOW, not only do we not know what is wrong with BJ now (The on call GI doctor was very concerned by his stools and undigested food in them) but we put our kid through HELL for no reason. His eos count in his blood is still very high. What does that mean if there are no eosinophils in his scope? >> 's GI told us that there could be eosinophil esophagitis even without eos in the esophagas with biopsy. 's endo I thought showed alot of inflamation, but not eos. He was foiund to have food allergies, and the G'I said that is what is causing the GI symptoms. Poor BJ, that is terrible what they put you all through. I hope you have contacted a good lawyer. Cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 No, they just ran the TPN from an IV line. Dawn-KS, mommy to Dakota, 7 and aka BJ, 3 (eosinophilic gastroenteritis, Nissen, asthma, reflux), and mommy to Mackenzie Marie (due December 24) Re: [eosinophilic gastroenteritis] OH MY GOD! Dawn, What a nightmare! Sorry you're having such a rough time. Did BJ get a central line? If so, did you sign him out with that in? Steph. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 One bag was a yellow green color and one was white. One definitely I remember said lipids on it. Dawn-KS, mommy to Dakota, 7 and aka BJ, 3 (eosinophilic gastroenteritis, Nissen, asthma, reflux), and mommy to Mackenzie Marie (due December 24) Re: [eosinophilic gastroenteritis] OH MY GOD! Dawn, What a nightmare! Sorry you're having such a rough time. Did BJ get a central line? If so, did you sign him out with that in? Steph. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 You can run TPN phreiferally only at I 10 concentration. So sorry you have had such a hell time at the hospital. Hopefully you can give them the hell they deserve. God I be stomping. Lets hope you get some RIGHT answeres soon Beatrix Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 Dawn, What a nightmare! Sorry you're having such a rough time. Did BJ get a central line? If so, did you sign him out with that in? Steph. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 WOW. I didnt think you could run it through a peripheral IV line. What color was it? Maybe they just didnt add the lipids. ANDREA? Steph. Re: [eosinophilic gastroenteritis] OH MY GOD! No, they just ran the TPN from an IV line. Dawn-KS, mommy to Dakota, 7 and aka BJ, 3 (eosinophilic gastroenteritis, Nissen, asthma, reflux), and mommy to Mackenzie Marie (due December 24) Re: [eosinophilic gastroenteritis] OH MY GOD! Dawn, What a nightmare! Sorry you're having such a rough time. Did BJ get a central line? If so, did you sign him out with that in? Steph. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 1999 Report Share Posted October 9, 1999 No, you are not supposed to run hyperal nor lipids (especially though a perif line)! I can't believe they did that. Re: [eosinophilic gastroenteritis] OH MY GOD! Dawn, What a nightmare! Sorry you're having such a rough time. Did BJ get a central line? If so, did you sign him out with that in? Steph. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 1999 Report Share Posted October 10, 1999 In a message dated 10/10/99 9:34:36 AM Pacific Daylight Time, transcription@... writes: << WHAT? Can someone please clue me into HOW you have have EE without Eos in biopsies??? I mean, certainly the disease is never really " cured " but the eos would have to be there at some point or another to MAKE the diagnosis? (eos es >> I know, it didn't make sense to me either, but thats what the GI said, and the CAP RAST and skinprick testing showed food allergies. We are going to Boston Wednsday, I think I will stop by the records dept. and see if I can get a copy of the biopsy reports. I know they will mail them, but maybe I can get it the same day. Cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 1999 Report Share Posted October 10, 1999 WHAT? Can someone please clue me into HOW you have have EE without Eos in biopsies??? I mean, certainly the disease is never really " cured " but the eos would have to be there at some point or another to MAKE the diagnosis? (eos esophagitis/GT, former TPNr) (Mom to 5 with EE/GTs; , , Korey, Kody (TPN), Killian ______________________________________________ " We thought we would teach our children about the world but ended up teaching the world about our children " . http://www.c4isr.com/harlow I must be mis-reading this. Re: [eosinophilic gastroenteritis] OH MY GOD! In a message dated 10/9/99 12:44:12 PM Pacific Daylight Time, supplyguy@... writes: << I just can't even describe how MAD I was. The hospital is launching an investigation into what happened. I signed BJ out of the hospital. NOW, not only do we not know what is wrong with BJ now (The on call GI doctor was very concerned by his stools and undigested food in them) but we put our kid through HELL for no reason. His eos count in his blood is still very high. What does that mean if there are no eosinophils in his scope? >> 's GI told us that there could be eosinophil esophagitis even without eos in the esophagas with biopsy. 's endo I thought showed alot of inflamation, but not eos. He was foiund to have food allergies, and the G'I said that is what is causing the GI symptoms. Poor BJ, that is terrible what they put you all through. I hope you have contacted a good lawyer. Cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 1999 Report Share Posted October 10, 1999 I agree that they would have to be there at some point, but they may be in the serosal layer. If the esophagus has the same tissue structure as the intestine, That would not show up on a typical biopsy with an endoscoscopy. Someone else had said one day on the list that eos can be patchy. If that is the case maybe they just didn't get the right spot. Or maybe When the biopsy was taken the esophagus was in a calm state. Are there always eos in biopsies when the peripheral eos are high? JUDY (ADULT GE) Re: [eosinophilic gastroenteritis] OH MY GOD! In a message dated 10/9/99 12:44:12 PM Pacific Daylight Time, supplyguy@... writes: << I just can't even describe how MAD I was. The hospital is launching an investigation into what happened. I signed BJ out of the hospital. NOW, not only do we not know what is wrong with BJ now (The on call GI doctor was very concerned by his stools and undigested food in them) but we put our kid through HELL for no reason. His eos count in his blood is still very high. What does that mean if there are no eosinophils in his scope? >> 's GI told us that there could be eosinophil esophagitis even without eos in the esophagas with biopsy. 's endo I thought showed alot of inflamation, but not eos. He was foiund to have food allergies, and the G'I said that is what is causing the GI symptoms. Poor BJ, that is terrible what they put you all through. I hope you have contacted a good lawyer. Cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 1999 Report Share Posted October 10, 1999 In a message dated 10/10/99 2:28:49 PM Pacific Daylight Time, transcription@... writes: << (with IEE there is little change or an increase) and they do NOT respond to prednisone therapy or elemental diets. This is all a little different from EG. With IEE, the eos are a definite marker required for dx of the condition, >> is curently using a flovent inhaler, and swallowing the med to coat the esophagas, he has been having less symptoms, but not a major difference. It will be 8 weeks around the 25th. Isn't flovent a type of prednisone? If prednisone and eleental diet don't work, what does? Cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 1999 Report Share Posted October 10, 1999 Judy, We have done multiple and many tests trying to correlate peripheral eos counts with our eos in bxs. Obviously, with this many affected members, this stuff is easily done to try and find that correlation. However, we found NO correlation between the two. They have no idea what the mechanism is for the eos in the GI tract but it very likely is not the same as eos that move throughout the blood stream. After multiple negative biopsies, I can't believe you would miss eos esophag every single time. Our docs always biopsy us at the top, middle and bottom of the esophagus. Every time, every biopsy when were symptomatic, there were tons of eos in every single specimen. Every time, every biopsy after steroid treatment and with 4 boys after initiation of their elemental diets, there were no eos. As far as esophageal biopsies, they should show up -- the tissue structure is not the same as intestines. They could be patchy, but again, if there are three different locations done multiple times with negative results, I dont think the eos are there. I cant see how you can even come up with the dx of IEE without any eos!!!!! With children, eos can be there from reflux too. With reflux, however, the eos are usually not in as high of numbers as with IEE, they decrease in number going up the esophagus (with IEE there is little change or an increase) and they do NOT respond to prednisone therapy or elemental diets. This is all a little different from EG. With IEE, the eos are a definite marker required for dx of the condition, much like that in CIP where one marker is air fluid level on abdominal films. It took us almost a year to get this " proof " , or this definite marker, before they actually labeled Kody with CIP. Before we thought he had it, but without this marker, he didnt meet the criteria for the disease. Same with IEE, there are only a few markers, but eos are a big one. I understand there are some differences with EG, however. S. Re: [eosinophilic gastroenteritis] OH MY GOD! I agree that they would have to be there at some point, but they may be in the serosal layer. If the esophagus has the same tissue structure as the intestine, That would not show up on a typical biopsy with an endoscoscopy. Someone else had said one day on the list that eos can be patchy. If that is the case maybe they just didn't get the right spot. Or maybe When the biopsy was taken the esophagus was in a calm state. Are there always eos in biopsies when the peripheral eos are high? JUDY (ADULT GE) Re: [eosinophilic gastroenteritis] OH MY GOD! In a message dated 10/9/99 12:44:12 PM Pacific Daylight Time, supplyguy@... writes: << I just can't even describe how MAD I was. The hospital is launching an investigation into what happened. I signed BJ out of the hospital. NOW, not only do we not know what is wrong with BJ now (The on call GI doctor was very concerned by his stools and undigested food in them) but we put our kid through HELL for no reason. His eos count in his blood is still very high. What does that mean if there are no eosinophils in his scope? >> 's GI told us that there could be eosinophil esophagitis even without eos in the esophagas with biopsy. 's endo I thought showed alot of inflamation, but not eos. He was foiund to have food allergies, and the G'I said that is what is causing the GI symptoms. Poor BJ, that is terrible what they put you all through. I hope you have contacted a good lawyer. Cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 1999 Report Share Posted October 10, 1999 Cathy, Food allergies do not make a diagnosis of IEE. One of my kids is skin test NEGATIVE to foods, but still has a diagnosis of IEE. There is something serious missing here -- no eos in the bx's then how can they justify this dx? How do they know the inflammatin (I'm assuming there is inflammation) is not from reflux or other causes? Everyone with food allergies does not have IEE. Everyone with food allergies and esophagitis, does not have IEE. AND everyone with IEE does not have food allergies. Man, this is scary. Where are you followed? Steph. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 1999 Report Share Posted October 10, 1999 Cathy, FLovent is a topical steroid. It is not prednisone, however. Elemental diets have been proven to work in every case of IEE. Prednisone always works (for IEE, I know it is not as effective always with EG) but the side effects are horrible. If elemental diets and prednisone dont work, then it's not IEE. Steph. Re: [eosinophilic gastroenteritis] OH MY GOD! In a message dated 10/10/99 2:28:49 PM Pacific Daylight Time, transcription@... writes: << (with IEE there is little change or an increase) and they do NOT respond to prednisone therapy or elemental diets. This is all a little different from EG. With IEE, the eos are a definite marker required for dx of the condition, >> is curently using a flovent inhaler, and swallowing the med to coat the esophagas, he has been having less symptoms, but not a major difference. It will be 8 weeks around the 25th. Isn't flovent a type of prednisone? If prednisone and eleental diet don't work, what does? Cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 1999 Report Share Posted October 11, 1999 In a message dated 10/10/99 7:09:39 PM Pacific Daylight Time, transcription@... writes: << Everyone with food allergies does not have IEE. Everyone with food allergies and esophagitis, does not have IEE. AND everyone with IEE does not have food allergies. Man, this is scary. Where are you followed? St >> At Bosto Childrens. Maybe I heard the Dr. wrong. I know the first endo looked ok visually, but showed esophagitis by biopsy, the second endo anout 6 months later, inspite of being on reglan and prilosec for almost a year, looked bad along the entire esophagas and biopsies showed damage . I will look at the records I have so far, and if I can't get answers from that, I will call the GI. Cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 11, 1999 Report Share Posted October 11, 1999 In a message dated 10/10/99 7:11:14 PM Pacific Daylight Time, transcription@... writes: << Elemental diets have been proven to work in every case of IEE. Prednisone always works (for IEE, I know it is not as effective always with EG) but the side effects are horrible. If elemental diets and prednisone dont work, then it's not IEE. >> I wonder why the GI has not tried elimental diet yet? maybe because is to old to restrict like that? He;s very conservative, maybe he's waiting to see what the next endo shows after the flovent has been used for the full 8 weeks. Cathy Cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 1999 Report Share Posted October 13, 1999 Group, I know that my doc at Mayo Clinic did his homework on this condition & said that he found thru his research that the eosinophilic cells tend to be very patchy with regards to biopsies. They can be here & not there & they are very tiny & hard to confirm. That's just exactly why this disease is so very awful. You just can't prove it. I have made some changes in my world. I'm very sick most of the time these days & have had to decrease my work schedule from 5 days per week to 3 days per week. I just can't get this jiggling to stop & know that the life sustaining concepts are failing. I have applied to SS but feel pretty doubtful that they will come thru in time to do any good for me here. My thought processes are very different & a bit muddled most of the time. It's like being in a car driving in the fog all the time. Not FUN!!!!!! I sat my kids down & talked to them about what is happening & that had to be the hardest thing I've ever done in my life. I was in the hospital for 4 days this month already & the docs told me that this would continue & become more frequent until finally I just wouldn't make it back home. So, it was time to tell my kids. My husband already knew that my disease was advancing, we have kept talking during this whole experience & I have kept nothing from him. I have begun making some audio tapes for my kids, like " the day you were born " & " my favorite memories of time with you " etc. I thought that this might give them some comfort once they are doing better after I'm gone. It's just that I don't know what else to do here, & it brings me some comfort to be a part of the whole process. I know that this is hard to read coming from someone only 39 yrs old -so I apologize for the sadness of this message. I hope you all have a wonderful day-seize the day-make it yours!!!!! Take Care U, (Camp878904) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 1999 Report Share Posted October 14, 1999 , I recently came across an article from a Mayo Clinic site and wondered if it might pertain to you. It is about an Eosinophilic Disease that is caused by contaminants in some Dietary supplements. The symptoms sounded similar to what you have said about yours. Thought you might like to see it. http://www.mayohealth.org/mayo/9808/htm/diet.htm This is a real scary article so hope it doesn't pertain to you. If it does then it might shed some light. There is a support group you can access at the bottom of the page. Good Luck , JUDY (ADULT GE) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 1999 Report Share Posted October 14, 1999 , I can't imagine how hard this time is for your family. we are praying for you all. Cathy Quote Link to comment Share on other sites More sharing options...
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