Guest guest Posted March 17, 2000 Report Share Posted March 17, 2000 Jacque, There is no problem mixing Elecare and foods -- I suspect they just want to go one way or the other, particularly in the beginning and not confuse the issues., i.e. if he were doing both and had a reaction, you wouldn't know what he was reacting to. Has Matt had an immunologic evaluation, IgG,IgM, IgA, T&B cell function? Steph. [eosinophilic gastroenteritis] update > > >Hello everyone, > > Just to let you know what a productive week that we have >had! I have been in communication with the doc's at Mt. Sinai Hospital >in New York City! YEAHHHH! They are going to meet with in June. >It is a long time away, so they are currently working with me on ways >that I can try to keep Matt's spirits high and perhaps stabilize him or >even gain some weight. NY's findings agree with our GI's diag. with the >eos. entropothy. What is confusing for him is the low grade fevers that >Matt will continually run, with the fevers spiking sometimes a couple of >nights a week. He believes that there is something else inside of Matt >causing complications. Duhh, it is why we are referred to NY in the >first place. Currently, we are taking a 5 day diet, including labels and >amounts. Mt. Sinai hopes to rule out anything that we may be >accidentally giving Matt which has been restricted from his diet. After >reviewing his diet, we may have to go to NY to meet in the clinic and >meet with the dietitian. We are all hoping that any communication can be >done through our GI. > Phyllis, the NY doc wanted to know if Matt is on any supplemental >formula. I let him know that we had questioned about using Elecare and >he would like to wait until he reviews Matt's diet before he suggests >using the Elecare. He said that it would be hard for an 8 year old to >take it after eating for 8 years. He said that Matt would not be able to >take solid food. (We were under the impression from earlier >conversations, that you can mix the two) He also said that the Elecare >tastes like battery acid, yummy. > I see a lot of people mentioning weight in pounds. I was wondering >if I give Matt's weight, if I could have some comparisons. I only have >his age group and his brothers to compare him to but no one who also has >experience with this illness. I want to make sure that I am not >overreacting. 's DOB is 7-31-91. He is currently weighing in at >43.5 and 47 inches. Thanks for any input. > Jacque. > > >------------------------------------------------------------------------ >GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 0.0% >Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! >http://click.egroups.com/1/937/5/_/474479/_/953299425/ >------------------------------------------------------------------------ > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2000 Report Share Posted March 17, 2000 Jacque. One more thing... I would describe the taste of Elecare more like liquid vomit -- Steph. [eosinophilic gastroenteritis] update > > >Hello everyone, > > Just to let you know what a productive week that we have >had! I have been in communication with the doc's at Mt. Sinai Hospital >in New York City! YEAHHHH! They are going to meet with in June. >It is a long time away, so they are currently working with me on ways >that I can try to keep Matt's spirits high and perhaps stabilize him or >even gain some weight. NY's findings agree with our GI's diag. with the >eos. entropothy. What is confusing for him is the low grade fevers that >Matt will continually run, with the fevers spiking sometimes a couple of >nights a week. He believes that there is something else inside of Matt >causing complications. Duhh, it is why we are referred to NY in the >first place. Currently, we are taking a 5 day diet, including labels and >amounts. Mt. Sinai hopes to rule out anything that we may be >accidentally giving Matt which has been restricted from his diet. After >reviewing his diet, we may have to go to NY to meet in the clinic and >meet with the dietitian. We are all hoping that any communication can be >done through our GI. > Phyllis, the NY doc wanted to know if Matt is on any supplemental >formula. I let him know that we had questioned about using Elecare and >he would like to wait until he reviews Matt's diet before he suggests >using the Elecare. He said that it would be hard for an 8 year old to >take it after eating for 8 years. He said that Matt would not be able to >take solid food. (We were under the impression from earlier >conversations, that you can mix the two) He also said that the Elecare >tastes like battery acid, yummy. > I see a lot of people mentioning weight in pounds. I was wondering >if I give Matt's weight, if I could have some comparisons. I only have >his age group and his brothers to compare him to but no one who also has >experience with this illness. I want to make sure that I am not >overreacting. 's DOB is 7-31-91. He is currently weighing in at >43.5 and 47 inches. Thanks for any input. > Jacque. > > >------------------------------------------------------------------------ >GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 0.0% >Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! >http://click.egroups.com/1/937/5/_/474479/_/953299425/ >------------------------------------------------------------------------ > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2000 Report Share Posted March 17, 2000 As has been the case with us all along, this is absolutely correct. It is everything. Steph. Re: [eosinophilic gastroenteritis] update > > >Dr's Sicherer and Samson put our son on an elimination diet for 6 weeks last >Dec/Jan. >He ate only 8 or so foods. It was extremely difficult and did not result in any >change for the better of for the worse in his esophagus. I think the bottom line is >that everyone thinks they can determine what the offending foods are( I used to >think that when Dan was first diagnosed) but time and many tests have shown us that >it is all foods and all proteins. > > Mom to Dan 18 yrs old EE > >Tom & Jacque wrote: > >> >> >> > >> > >> >> Dear Steph, >> >> I have NO idea what you just asked me. I am very new at this, so if you >> could describe some of the initials of the tests that you asked me, it would be >> helpful. His GI has completed the upper and lower GI's with negative results. >> We know that his esophagus is clear. Doc found the Eos. at a high count in >> Matt's stomach and small intestine. His eos. are continually high along with >> his allergen level. >> He has had blood drawn, for reactions to foods. Because of the levels, Matt >> has had all dairy, soy, peanut, and wheat taken out of his diet. >> We are meeting with Dr. Sampson and Dr. Sicherers on June 12. Although, we >> are currently in communication with Dr. Sicherers about Matt's diet. >> I believe that you are right about mixing the Elecare with food. I think >> that the NY doc is leaning towards putting Matt on an elimination diet. That >> will be hard for us, feeding and keeping Matt interested in food is already >> quite the challenge. >> Jacque >> >> > >> > Jacque, >> > >> > There is no problem mixing Elecare and foods -- I suspect they just want to >> > go one way or the other, particularly in the beginning and not confuse the >> > issues., i.e. if he were doing both and had a reaction, you wouldn't know >> > what he was reacting to. >> > >> > Has Matt had an immunologic evaluation, IgG,IgM, IgA, T&B cell function? >> > >> >> ------------------------------------------------------------------------ >> GET A NEXTCARD VISA, in 30 seconds! Get rates >> as low as 0.0% Intro APR and no hidden fees. >> Apply NOW! >> http://click.egroups.com/1/975/5/_/474479/_/953305178/ >> ------------------------------------------------------------------------ > > >------------------------------------------------------------------------ >PERFORM CPR ON YOUR APR! >Get a NextCard Visa, in 30 seconds! Get rates as low as >0.0% Intro or 9.9% Fixed APR and no hidden fees. >Apply NOW! >http://click.egroups.com/1/2121/5/_/474479/_/953306962/ >------------------------------------------------------------------------ > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2000 Report Share Posted March 17, 2000 For a comparison- AJ weights 42 pounds and is about 38 inches tall. She was 4 in December. Remi my healthier 2nd grader weighs in at 60 pounds and is 47 inches tall. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2000 Report Share Posted March 18, 2000 < > My son had EE without food allergies. The eos found in his esophagus were caused by long-term acid irritation. How we tested this was we put him on a 3 month course of max zantac and propulsid doses with no dietary changes. He was scoped and found to have no eos present. They were eliminated solely by eliminating the reflux. If he would have still had eos, then the chances were pretty high that food allergies were causing the eos. But please keep in mind that my son's reflux stems from idiopathic gastroparesis, or really delayed gastric emptying. We knew this was going to be a big factor in what was going on with his esophagus, and if we sped up the emptying, we would help things alot. Just a thought.. Quote Link to comment Share on other sites More sharing options...
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