Guest guest Posted January 2, 1999 Report Share Posted January 2, 1999 Good morning everyone, I was very happy to read about A.J feeling so much better. Sometimes when I read these letters, I feel so helpless afterwards. I do not understand a lot of the terminology that is written when tests or symptoms are described. Especially when my own son is so very sick. At least I am no longer alone in this strange and unknown disease. I want to thank everyone who helped me determine where Matt stood in the weight category. With his age group, he is very small, but I was unsure if I was overly concerned or not when it came to his disease. Now, I know that I have every reason to be worried. It is not all in my head! We have been in contact with a Dr. Sicherer out of Mt. Sinai. He has been monitoring Matt's progress for the past couple of weeks until we can go there in June. He is concerned about the low grade fevers that Matt continually runs. 's temps often peak to a higher number at least once a week and sometimes more. These high fevers always follow severe stomach pain and they are almost always at night starting around dinner time. The Dr. told me that this is not normal wit the eos. entropothy. Does anyone else suffer with the fevers? Judy, Dr. Sicherer may be taking Matt off of the gastrocrom all together. It is still causing a lot of discomfort. The snacking seemed to take the edge off of it but we have had a couple of bad nights lately and they start directly after the medicine. Could Matt's body be rejecting the gastrocrom? We have even started giving him Smart Water to take with everything (in case our water has some sort of bacteria in it that is making Matt sick.) We are defiantly grasping at straws. We turned in a 30 page diet that Mt. Sinai requested of Matt. including diet, amounts, name brands and all of the ingredient labels. This was for four days. The results are that Matt may be eaten foods that can cause a high reaction is eos. patients. I do not understand because we have cut almost everything out of his diet. He also is not getting enough calories. NO DUHHH, as my kids would say, everything is fat free that Matt can eat. Can anyone suggest any hints for an 8 year old? He cannot have any wheat, soy, all dairy (including casein and whey), and peanuts. We eat a lot of rice and corn based foods but they do not have much fat in them. Does anyone else have the eos. in the stomach and small intestine? I am reading a lot about the kiddos and adults who have the disease in the esophagus and it makes it hard to swallow food. Matt's esophagus is clean. His stomach and small intestine are loaded. Perhaps the symptoms are different for being in different areas. Forgive my ignorance but I have only my son to go by. Now the docs are telling me that he is not even a normal eos entropothy sufferer. Leave it to Matt, he has to do everything different. I am seriously considering asking Dr. Sicherer and his dietitian, to come over for dinner. Do you think that they would come to Maine? Then they can see what really goes on because I know that in June and in New York things will be different. Thank you for listening to the ranting and ravings of one ulcer-heading mom. Jacque Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2000 Report Share Posted March 31, 2000 Hi Jaque, Spencer only has Eos in his stomach, small and large intestines too. He experiences a lot of pain and he doesn't eat at all. Absolutely nothing goes into his stomach. I am beginning to think that there is no " Normal " for Eos's patients b/c I have heard the same thing about Spencer.....as he needs to be on IV's for nutrition. I can't imagine what his symptoms would be like if he were eating.....not that he would. LOL. Seems like you are on the right track with the doc's though. Good luck! [eosinophilic gastroenteritis] fevers? > Good morning everyone, > I was very happy to read about A.J feeling so much better. Sometimes > when I read these letters, I feel so helpless afterwards. I do not > understand a lot of the terminology that is written when tests or > symptoms are described. Especially when my own son is so very sick. At > least I am no longer alone in this strange and unknown disease. > I want to thank everyone who helped me determine where Matt stood in > the weight category. With his age group, he is very small, but I was > unsure if I was overly concerned or not when it came to his disease. > Now, I know that I have every reason to be worried. It is not all in my > head! > We have been in contact with a Dr. Sicherer out of Mt. Sinai. He has > been monitoring Matt's progress for the past couple of weeks until we > can go there in June. He is concerned about the low grade fevers that > Matt continually runs. 's temps often peak to a higher number at > least once a week and sometimes more. These high fevers always follow > severe stomach pain and they are almost always at night starting around > dinner time. The Dr. told me that this is not normal wit the eos. > entropothy. Does anyone else suffer with the fevers? > Judy, Dr. Sicherer may be taking Matt off of the gastrocrom all > together. It is still causing a lot of discomfort. The snacking seemed > to take the edge off of it but we have had a couple of bad nights lately > and they start directly after the medicine. Could Matt's body be > rejecting the gastrocrom? We have even started giving him Smart Water to > take with everything (in case our water has some sort of bacteria in it > that is making Matt sick.) We are defiantly grasping at straws. > We turned in a 30 page diet that Mt. Sinai requested of Matt. > including diet, amounts, name brands and all of the ingredient labels. > This was for four days. The results are that Matt may be eaten foods > that can cause a high reaction is eos. patients. I do not understand > because we have cut almost everything out of his diet. He also is not > getting enough calories. NO DUHHH, as my kids would say, everything is > fat free that Matt can eat. Can anyone suggest any hints for an 8 year > old? He cannot have any wheat, soy, all dairy (including casein and > whey), and peanuts. We eat a lot of rice and corn based foods but they > do not have much fat in them. > Does anyone else have the eos. in the stomach and small intestine? > I am reading a lot about the kiddos and adults who have the disease in > the esophagus and it makes it hard to swallow food. Matt's esophagus is > clean. His stomach and small intestine are loaded. Perhaps the symptoms > are different for being in different areas. Forgive my ignorance but I > have only my son to go by. Now the docs are telling me that he is not > even a normal eos entropothy sufferer. Leave it to Matt, he has to do > everything different. > I am seriously considering asking Dr. Sicherer and his dietitian, > to come over for dinner. Do you think that they would come to Maine? > Then they can see what really goes on because I know that in June and in > New York things will be different. > > Thank you for listening to the ranting and ravings of one > ulcer-heading mom. Jacque > > > ------------------------------------------------------------------------ > LOW RATE, NO WAIT! > Get a NextCard Visa, in 30 seconds! Get rates > as low as 2.9% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > http://click.egroups.com/1/2122/5/_/474479/_/954593446/ > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2000 Report Share Posted April 1, 2000 Jacque- I can't help with the fevers but I can tell you that AJ's eos are in the stomach, large and small intestines. She had some in the esophagus but that is not what causes her pain. Phyllis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2000 Report Share Posted April 3, 2000 Dear Jacque, I have eos in my stomach and small intestine. None in the Esophagus. From everything I have learned here on the list, Gastrochrom is very controversial. It works very well for some and not at all for others. Most of the medical literature lists Prednisone as the drug of choice, and as you have probably read it can be a very mean drug. I think it is the goal of most to avoid it or get off of it if at all possible.... I think there are so many variables with this disease that no one is a typical case. At least I haven't heard many stories that are alike. I would be interested to know what they consider typical for this disease..LOL When you consider that some test positive on scratch and not on blood, some visa versa, some on both and some don't test positive for any allergies at all and yet have the disease. What is typical.? Then there are the layers of the gut that can be involved... Personally I wonder if that makes a difference in what treatment works. I am still struggling to understand all the terminology and tests.. It is definitely a learning experience. Can Matt eat meat? That could be a major source of calories and more fat..... I know there are some flours that are made out of potato, corn and rice. These can be used to make a lot of baked goods without the wheat. Corn oil, Olive oil and even vegetable shortening if he can tolerate it would be fat sources. Even eggs.... Frying a lot of things would add fat.. I guess it all depends on what he tolerates... I wish you luck. My temperature is usually below normal.. When I was in the hospital and they were monitoring it regularly, It was often below 96 in the mornings. They would go and get another thermometer to double check it. I seldom take my temp because of that. It is hard to convince medical personal that a normal temp for everyone else is above normal for you..... I would be interested to hear what they consider reactive foods for us.... Hang in there, Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2000 Report Share Posted April 3, 2000 Judy, When I read Jacques' post, I had the same thought. There is no " typical " patient with any of the eos' enteropathies. The " typical " patient IS ATYPICAL!!! lol I think the doctors that say that are the ones with little experience with the disease.. and are relying on textbooks for answers, which of course, provide no useful information at all. Dr. Sampson gave us a list of foods less likely to react to. Of course, it made us all sick eventually. They included things like tuna (you have to check the label), apples (Kody was skin test positive so this was out of the question for him), potatoes, corn (ditto for kody and anotehr kid). Steph. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2000 Report Share Posted April 3, 2000 Original note from Steph: " Dr. Sampson gave us a list of foods less likely to react to. Of course, it made us all sick eventually. " Is is possible to post the list to this site, or is it too long? Thanks, Lynn Quote Link to comment Share on other sites More sharing options...
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