Guest guest Posted December 14, 1998 Report Share Posted December 14, 1998 Just wanted to thank Kenny for all his input. I will certainly pass your experience on to all our docs. I agree with Kenny Dawn. Our allergy doc gave us the " go ahead " too and the result has been many more days in the hospital and higher doses of prednisone. Dr. B is right on, says we should all go on Neocate only for six weeks, then add one food by food and find the culprits. Open food challenges are the only way. I don't think skin tests (or even the IgE/IgG mediated tests) are effective. THe only thing that matters are the symptoms SJHarlow@... http://www.c4isr.com/harlow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 1998 Report Share Posted December 14, 1998 >Just wanted to thank Kenny for all his input. I'm glad I could help. This might be belaboring the point a bit too much, but I just wanted to show you how ignorant the entire medical staff (in my case) was to the role of food. When I was in the hospital for my first (diagnosed) case of EG, I was in the hospital for 11 days. They only diagnosed EG about a month later when the finally did a biopsy. From the time I got in the hospital, I was unable to keep ANYTHING in my system, I would even throw up water (believe me, everything else was gone). This went on for days. I got to the point where I wouldn't even drink water, as the pain of throwing up was too much. After about the 5th day of no food, they got worried, and got the bright idea of giving me a nutrient drink to see if I could hold that down. I went into anaphylactic shock a few seconds after I swallowed, while I was literally in my doctors hands. I spent the night in intensive care... Around day 6-7, I was finally able to tolerate water, and they immediately put me on a liquid diet to push the nutrients (I was being fed by IV then, and they were really worried). Of course I had problems tolerating the liquid diet they gave me, but I pushed on with occasional periods of keeping the liquid diet down. When they found out I was testing small bits of bread, and I could keep that down, they immediately pushed me onto solid foods (again, they were very scared for me since I had no solid food for many days). Well you guessed it... it was the standard hospital food, with lots of seasoning. I ate it thinking the " doctors knew what they were doing " . I couldn't keep any of that food down. They continued to bring me the standard stuff, even though I had asked for very bland meals. I picked through what they gave me, and could hold down rice, jello and water. When I finally got pissed off enough at the food they were bringing me, I personally called for a meeting with the doctor, dietitian, AND the hospital chef. I told them what I wanted: large portions of rice, bread, unflavored jello (on advice from my mother!). Nothing else. Gee, I kept all that basic food down with no problems! by day 10 I was slowly able to eat more and more, but it was standard rotational diet food with no seasoning - steamed plain chicken, rice, steamed carrots, and a few other things. I guess I made a short story long... but I was amazed that after not being able to tolerate food for more than a week, and they still didn't know what the problem was, that they immediately put me onto a regular diet at the first hint I could keep food down. It still amazes me today that a little common sense (like my mother had) was not part of the medical staff's thinking. They are entirely ignorant of what to feed people who have stomach problems, or any other food allergy or intolerance. In the hospital, they just dish out the standard federally balanced meals they give to everyone, thinking that is what everyone needs to eat. If the doctors had a little more common sense, I could have been out of the hospital many days earlier. The lesson I have learned from this (and all that I have learned since) is that I need to be the most educated person about my diet, and need to completely control what I eat. Do not eat what they put in front of you when you know it will make you sick. In my case, " mom knew best " . Happy Holidays, Kenny (sorry if I sound militant about doctors ignorance about food... but I continue to be frustrated by the fact that my allergist admitted that doctors only get around 4 hours of food training in medical school. He is absolutely clueless about the role of food.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 1998 Report Share Posted December 14, 1998 In a message dated 12/14/98, 4:51:03 PM, eosinophilic gastroenteritis (AT) onelist (DOT) com writes: << Open food challenges are the only way. I don't think skin tests (or even the IgE/IgG mediated tests) are effective. THe only thing that matters are the symptoms>> I completely agree with this and with Kenny. We did the food challenges for . After removing the foods that cause problems, has been much better. We have seen very few symptoms of the EE in the past few months. Jen (, 11/7/95, eosinophilic esophagitis, food allergies, asthma) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 Dakota is 7-1/2 and 39 lbs. Dawn ---------- > From: SDidinsky@... > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > Subject: Re: [eosinophilic gastroenteritis] Update on > Date: Wednesday, January 19, 2000 6:59 PM > > From: SDidinsky@... > > : > > Glad to hear that is doing well. Cant believe that he is 31 pounds. > Come on - Jake will be 7 in April and is 40 pounds wet!!!!!!! > > Love, > Sharon > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2000 Report Share Posted January 18, 2000 If anyone got a " receipt request " when opening my email, sorry about that. I'm not sure what happened, but I fixed it! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2000 Report Share Posted January 19, 2000 What great news ! It is always encouraging to hear how well one of the kids is doing.. and also encouraging when a doctor says something that makes sense! (everything you posted made perfect sense). It is important, however to keep an eye on the degree of inflammation (they refer to it in grades I-IV). Grade I inflammation, it is less clear whether such aggressive intervention is warranted. Just FYI Steph. [eosinophilic gastroenteritis] Update on Hello everyone - Since it's been such a busy day, I figured you all needed one more email! LOL! We saw the GI and the surgeon yesterday. Our little man who couldn't climb above 5th percentile as an infant now (drumroll!) is 35 inches tall and weighs 31 pounds! Holy Moly! I guess the constant eating is working well! The GI was great, and spent a lot of time answering my questions. The big question I asked was: is the delayed emptying caused by eos? And he said that they only found the high count of eos 5 cm above the LES. The biopsies higher up the esophagus showed no eos. He said that if has EE, then the eos would be present higher up. I think they did 9 biopsies in the esophagus, and three of those were near the LES. So he feels confident that the eos were the result of chronic inflammation of the esophagus due to all the reflux. He said that he and Dr. Jolley have discussed 's case, and they feel that is not likely to outgrow this in the foreseeable future. So we are going to do an endoscopy on Feb 9 to see if he has esophagitis. If he does, they are going to talk about performing another pyloromyotomy to speed up the emptying. I talked to him about performing the gastric emptying study with solids as opposed to liquids ('s was with apple juice only) He said that since liquids empty so much faster that solids, the results may be technically more accurate, wouldn't change his treatment in any way. The whole feel is that they want to make sure that the current medications are doing the best. Since 's had this problem since birth, and will most likely continue to have it for many moons, they want to take good care of his esophagus now. We don't want Barrett's and strictures by the time he's 20 from all this stuff. But that's about all from here. 's doing really great, and is really starting to talk! My quiet little guy who never cooed or babbled until he was over a year old is learning new words every day! He said " play ball " to me on the phone today! I was so ecstatic I could've floated home! ---------------------------------------------------------------------------- Please click above to support our sponsor ---------------------------------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2000 Report Share Posted January 19, 2000 : Glad to hear that is doing well. Cant believe that he is 31 pounds. Come on - Jake will be 7 in April and is 40 pounds wet!!!!!!! Love, Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2000 Report Share Posted January 19, 2000 In a message dated 1/19/00 8:10:58 PM Eastern Standard Time, jones5@... writes: << Dakota is 7-1/2 and 39 lbs. >> I feel better, but she is a girl and he is a boy. Love, Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2000 Report Share Posted January 19, 2000 Steph- Thanks for your letter. I will ask them for the grade of inflammation when the endoscopy is done. You always have great information for me to learn! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2000 Report Share Posted January 19, 2000 Sharon - I know, I about fell off the chair when I saw how much! He doesn't look it, he is just very solid, no fat pudges or rolls anywhere. I guess I'm a version of my grandmother: pushing food all the time! It's great to hear from you! I think of you all the time. I hope things are going well for you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2000 Report Share Posted April 10, 2000 Hey Sherri, How many LB's does weigh? Spencer weighs 20 lbs. and his maintenance is 20 cc's an hour of fluid. [eosinophilic gastroenteritis] Update on > Just got back from the ped with . She has lost four pounds. is > also still refusing all liquids. I did manage to get about 200cc's in her > today. The ped wants at least 500 ccs/day. If loses any more weight > this week, then the ped wants to admit her. I guess we just have to wait > and see. The ped also wants GI to see , but 's GI is dragging > his feet on that one. It will be interesting to see who wins that battle. > > Sherri > > ------------------------------------------------------------------------ > Special Offer-Earn 300 Points from MyPoints.com for trying @Backup > Get automatic protection and access to your important computer files. > Install today: > http://click.egroups.com/1/2344/5/_/474479/_/955407492/ > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2000 Report Share Posted April 10, 2000 weighs 30 lbs. Is the 20 cc's an hour 24 hours a day? How much is his total intake? Sherri Allred writes: > Hey Sherri, > > How many LB's does weigh? Spencer weighs 20 lbs. and his maintenance > is 20 cc's an hour of fluid. > > [eosinophilic gastroenteritis] Update on > > > > Just got back from the ped with . She has lost four pounds. > is > > also still refusing all liquids. I did manage to get about 200cc's in her > > today. The ped wants at least 500 ccs/day. If loses any more > weight > > this week, then the ped wants to admit her. I guess we just have to wait > > and see. The ped also wants GI to see , but 's GI is dragging > > his feet on that one. It will be interesting to see who wins that battle. > > > > Sherri > > > > ------------------------------------------------------------------------ > > Special Offer-Earn 300 Points from MyPoints.com for trying @Backup > > Get automatic protection and access to your important computer files. > > Install today: > > http://click.egroups.com/1/2344/5/_/474479/_/955407492/ > > ------------------------------------------------------------------------ > > > > > ------------------------------------------------------------------------ > High rates giving you headaches? The 0% APR Introductory Rate from > Capital One. 9.9% Fixed thereafter! > http://click.egroups.com/1/3010/5/_/474479/_/955407770/ > ------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2000 Report Share Posted April 10, 2000 Sherri, For Hydration at 20 lbs. he need 20 cc's 24 hours a day. 500 cc's seems quite a bit low for her weight. At the calculation that the hospitals use would give her 740 cc's a day for hydration. That is IV so I don't know if it would be higher for oral. I would be careful because dehydration can be very harmful especially if it goes unnoticed. The electrolytes can get very whacked out, like Potassium. [eosinophilic gastroenteritis] Update on > > > > > > > Just got back from the ped with . She has lost four pounds. > > is > > > also still refusing all liquids. I did manage to get about 200cc's in her > > > today. The ped wants at least 500 ccs/day. If loses any more > > weight > > > this week, then the ped wants to admit her. I guess we just have to wait > > > and see. The ped also wants GI to see , but 's GI is dragging > > > his feet on that one. It will be interesting to see who wins that battle. > > > > > > Sherri > > > > > > ------------------------------------------------------------------------ > > > Special Offer-Earn 300 Points from MyPoints.com for trying @Backup > > > Get automatic protection and access to your important computer files. > > > Install today: > > > http://click.egroups.com/1/2344/5/_/474479/_/955407492/ > > > ------------------------------------------------------------------------ > > > > > > > > > ------------------------------------------------------------------------ > > High rates giving you headaches? The 0% APR Introductory Rate from > > Capital One. 9.9% Fixed thereafter! > > http://click.egroups.com/1/3010/5/_/474479/_/955407770/ > > ------------------------------------------------------------------------ > > > > > > ------------------------------------------------------------------------ > You can win $1000! > Time-limited offer. Enter today at: > http://click.egroups.com/1/2864/5/_/474479/_/955409120/ > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2000 Report Share Posted April 10, 2000 , Thanks for all the info. I am trying to increase her fluid intake. Unfortunately, the only other liquid she can take, besides Vivonex and Pedialyte is water. She cannot have anything else. Its funny that you mentioned Sprite. used to be able to drink it. BTW, what did you decide about preschool. Did you get my email? Sherri Allred writes: > Sherri, > > For Hydration at 20 lbs. he need 20 cc's 24 hours a day. 500 cc's seems > quite a bit low for her weight. At the calculation that the hospitals use > would give her 740 cc's a day for hydration. That is IV so I don't know if > it would be higher for oral. I would be careful because dehydration can be > very harmful especially if it goes unnoticed. The electrolytes can get very > whacked out, like Potassium. > > > [eosinophilic gastroenteritis] Update on > > > > > > > > > > Just got back from the ped with . She has lost four pounds. > > > > is > > > > also still refusing all liquids. I did manage to get about 200cc's in > her > > > > today. The ped wants at least 500 ccs/day. If loses any more > > > weight > > > > this week, then the ped wants to admit her. I guess we just have to > wait > > > > and see. The ped also wants GI to see , but 's GI is > dragging > > > > his feet on that one. It will be interesting to see who wins that > battle. > > > > > > > > Sherri > > > > > > > > > ------------------------------------------------------------------------ > > > > Special Offer-Earn 300 Points from MyPoints.com for trying @Backup > > > > Get automatic protection and access to your important computer files. > > > > Install today: > > > > http://click.egroups.com/1/2344/5/_/474479/_/955407492/ > > > > > ------------------------------------------------------------------------ > > > > > > > > > > > > > ------------------------------------------------------------------------ > > > High rates giving you headaches? The 0% APR Introductory Rate from > > > Capital One. 9.9% Fixed thereafter! > > > http://click.egroups.com/1/3010/5/_/474479/_/955407770/ > > > ------------------------------------------------------------------------ > > > > > > > > > > ------------------------------------------------------------------------ > > You can win $1000! > > Time-limited offer. Enter today at: > > http://click.egroups.com/1/2864/5/_/474479/_/955409120/ > > ------------------------------------------------------------------------ > > > > > ------------------------------------------------------------------------ > Get paid for the stuff you know! > Get answers for the stuff you don’t. And get $10 to spend on the site! > http://click.egroups.com/1/2200/5/_/474479/_/955410471/ > ------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2000 Report Share Posted April 10, 2000 Sherri, Let us know how she does this week ok? I did get your email. I was homeschooled way back when people thought that you were weird. LOL! So I have pretty much decided to homeschool. I just wanted to be able to send Spencer somewhere he can play with other kids. I really didn't think about food though. I don't want some idiot person trying to force feed Spencer and have him become traumatized. Even though I would practically put a sign around him. I am thinking maybe put him just some other activities like gym (he likes to tumble) and karate. There is a place called 'Little Gym' and it is kinda like just 2 hours every other day with fun activities, not really school. Spencer just takes tiny tastes of the Sprite......very diluted. Does not like the Sprite anymore or can she not have it? [eosinophilic gastroenteritis] Update on > > > > > > > > > > > > > Just got back from the ped with . She has lost four pounds. > > > > > > is > > > > > also still refusing all liquids. I did manage to get about 200cc's in > > her > > > > > today. The ped wants at least 500 ccs/day. If loses any more > > > > weight > > > > > this week, then the ped wants to admit her. I guess we just have to > > wait > > > > > and see. The ped also wants GI to see , but 's GI is > > dragging > > > > > his feet on that one. It will be interesting to see who wins that > > battle. > > > > > > > > > > Sherri > > > > > > > > > > > > ------------------------------------------------------------------------ > > > > > Special Offer-Earn 300 Points from MyPoints.com for trying @Backup > > > > > Get automatic protection and access to your important computer files. > > > > > Install today: > > > > > http://click.egroups.com/1/2344/5/_/474479/_/955407492/ > > > > > > > ------------------------------------------------------------------------ > > > > > > > > > > > > > > > > > ------------------------------------------------------------------------ > > > > High rates giving you headaches? The 0% APR Introductory Rate from > > > > Capital One. 9.9% Fixed thereafter! > > > > http://click.egroups.com/1/3010/5/_/474479/_/955407770/ > > > > ------------------------------------------------------------------------ > > > > > > > > > > > > > > ------------------------------------------------------------------------ > > > You can win $1000! > > > Time-limited offer. Enter today at: > > > http://click.egroups.com/1/2864/5/_/474479/_/955409120/ > > > ------------------------------------------------------------------------ > > > > > > > > > ------------------------------------------------------------------------ > > Get paid for the stuff you know! > > Get answers for the stuff you don’t. And get $10 to spend on the site! > > http://click.egroups.com/1/2200/5/_/474479/_/955410471/ > > ------------------------------------------------------------------------ > > > > > > ------------------------------------------------------------------------ > Avoid the lines and visit avis.com for quick and easy online > reservations. Enjoy a compact car nationwide for only $29 a day! > Click here for more details. > http://click.egroups.com/1/3011/5/_/474479/_/955411135/ > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2000 Report Share Posted April 10, 2000 Sherri, Sorry to hear you are having such a rough time. Did you try seeing Shaeffer instead of your GI? Any difference? Is he more willing to see her? Good luck. Phyllis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2000 Report Share Posted April 11, 2000 In a message dated 04/10/2000 4:26:06 PM Pacific Daylight Time, saherric@... writes: << weighs 30 lbs. >> My weighs 29 lbs and he is 4.5 yrs. old. Is that super bad or what? Di Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2000 Report Share Posted April 11, 2000 correction. mitch is almost 5(june 7) di Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2000 Report Share Posted April 11, 2000 This is about what BJ is, 29 lbs and he will be 5 in October Dawn, Loving mommy to 2 girls and a super strong little boy Re: [eosinophilic gastroenteritis] Update on > In a message dated 04/10/2000 4:26:06 PM Pacific Daylight Time, > saherric@... writes: > > << weighs 30 lbs. >> > My weighs 29 lbs and he is 4.5 yrs. old. Is that super bad or what? > Di > > ------------------------------------------------------------------------ > Win $1000 at eGroups! > Click here to find out how: > http://click.egroups.com/1/2861/5/_/474479/_/955459808/ > ------------------------------------------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2000 Report Share Posted April 11, 2000 That's about what Spencer will be prob. LOL! So no, it isn't. Actually that is reallly low. What does he get fed? Are the doctors concerned at all? Re: [eosinophilic gastroenteritis] Update on > In a message dated 04/10/2000 4:26:06 PM Pacific Daylight Time, > saherric@... writes: > > << weighs 30 lbs. >> > My weighs 29 lbs and he is 4.5 yrs. old. Is that super bad or what? > Di > > ------------------------------------------------------------------------ > Win $1000 at eGroups! > Click here to find out how: > http://click.egroups.com/1/2861/5/_/474479/_/955459808/ > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2000 Report Share Posted April 11, 2000 Maybe it is just really hard for a child to gain once they have been terribly slow when they are little one's?? Re: [eosinophilic gastroenteritis] Update on > > > > In a message dated 04/10/2000 4:26:06 PM Pacific Daylight Time, > > saherric@... writes: > > > > << weighs 30 lbs. >> > > My weighs 29 lbs and he is 4.5 yrs. old. Is that super bad or > what? > > Di > > > > ------------------------------------------------------------------------ > > Win $1000 at eGroups! > > Click here to find out how: > > http://click.egroups.com/1/2861/5/_/474479/_/955459808/ > > ------------------------------------------------------------------------ > > > > > > > > > ------------------------------------------------------------------------ > Avoid the lines and visit avis.com for quick and easy online > reservations. Enjoy a compact car nationwide for only $29 a day! > Click here for more details. > http://click.egroups.com/1/3011/5/_/474479/_/955462180/ > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2000 Report Share Posted April 11, 2000 In a message dated 4/11/00 6:31:31 AM Pacific Daylight Time, JMBWE123@... writes: << << weighs 30 lbs. >> My weighs 29 lbs and he is 4.5 yrs. old. Is that super bad or what? Di --- >> Ok, I am 35 and weigh 57lbs, now thars bad!! My friend has a 3.4 yr. old who weighs 25lbs. Cathy mom to 12, AS, EE, allergic to soy, nuts, peanuts, tomato, rice, carrot, string bean, kidney bean, orange, pear, onion, mustard seed, grape Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2000 Report Share Posted April 11, 2000 In a message dated 4/11/00 6:10:56 PM Pacific Daylight Time, andrea.allred@... writes: << Cathy, How tall are you? I think I would just need to blow on you to tip you over! LOL >> I'm 4' 10 " , but have 85degree scholiosis curve. If my back was straight, I would be about 5' 6' " tall. Cathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2000 Report Share Posted April 11, 2000 > Maybe it is just really hard for a child to gain once they have been > terribly slow when they are little one's?? > I think so, BJ can never seem to get over that 30 mark the doctors want him to get, he bounces between 25 and 30. Dawn, Loving mommy to 2 girls and a super strong little boy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2000 Report Share Posted April 11, 2000 > Maybe it is just really hard for a child to gain once they have been > terribly slow when they are little one's?? > I think so, BJ can never seem to get over that 30 mark the doctors want him to get, he bounces between 25 and 30. Dawn, Loving mommy to 2 girls and a super strong little boy Quote Link to comment Share on other sites More sharing options...
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