Guest guest Posted August 10, 1998 Report Share Posted August 10, 1998 In a message dated 98-08-10 21:53:54 EDT, you write: << Do you notice paleness, sinking eyes? >> YES> Clayton is very pale - large eyes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 1998 Report Share Posted August 10, 1998 Dawn, When Kody developed his gastric ulcer (the first time he was on prednisone) that is exactly the way he behaved too. We now give him Prilosec to protect him while on the prednisone and it works wonders. By the way, Kody has been off all foods by mouth for three days now and it is amazing the difference. His eyes are bright and sparkling, hehas color in his cheeks, he is happy. He may not ever be able to eat by mouth again, but if he feels this good... I dont care. SJHarlow@... http://www.c4isr.com/harlow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 1998 Report Share Posted August 10, 1998 Hi, we went to see the GI today and we got good news and bad news. First the good, gained 6 oz. since the last visit (I don't know how but I am not questioning it). Secondly, we waited an hour and a half past our appointment time to see Dr. Friesen and the nurses got to see firsthand and describe to Dr. Friesen how plays a little and then wanted to lay down. Never mind the fact that our morning started at 6am and by 8 he was back asleep till 10. He would play 5-10 minutes and then want to lay down for 5-10 minutes. Also, they got to see how he clenches his tummy and complains of pain. Dr. Friesen says he doesn't think this is related to EG, he thinks it may be something else(GREAT!). He scheduled a scope for Thursday so keep us in your thoughts then. He is afraid he may have yet another intestinal parasite (he has already had girarrdea(sp?)) or he mentioned something about an ulcer. I have to wonder if this was caused by the Prednisone if it is an ulcer. He mentioned upping the Predninone but I refused until I see this doctor in Nebraska for a second opinion. The reason he said he doesn't believe it is the EG is because he is not responding to the Prednisone plus he gained weight. I guess we will know Thursday. He said if it is the allergies, he will want to hospitalize him for a few days to give his tummy a little chance to heal and hopefully the meds will keep it from coming back. He thinks he may have gotten this the few weeks he was off Prednisone, this keeps making me wonder if he will ever be off Prednisone. Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 1998 Report Share Posted August 10, 1998 Do you notice paleness, sinking eyes? Dawn ---------- > From: SJHarlow@... > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > Subject: [eosinophilic gastroenteritis] Re: 's GI visit today > Date: Monday, August 10, 1998 8:46 PM > > From: SJHarlow@... > > Dawn, > > When Kody developed his gastric ulcer (the first time he was on > prednisone) that is exactly the way he behaved too. We now give him > Prilosec to protect him while on the prednisone and it works wonders. > > By the way, Kody has been off all foods by mouth for three days now and > it is amazing the difference. His eyes are bright and sparkling, hehas > color in his cheeks, he is happy. He may not ever be able to eat by > mouth again, but if he feels this good... I dont care. > > SJHarlow@... > http://www.c4isr.com/harlow > > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 1998 Report Share Posted August 11, 1998 In a message dated 8/10/98, 9:49:46 PM, eosinophilic gastroenteritis (AT) onelist (DOT) com writes: < > Dawn, did not respond to the prednisone. He has EE. He eosinophil counts did not go down while on prednisone. Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 1998 Report Share Posted August 11, 1998 Jen... If has EE and his eos count did not decrease while on the prednisone (I am assuming a dose of at least 1mg/kg),... then how do they know the eos are not from severe reflux??? and not EE?? SJHarlow@... http://www.c4isr.com/harlow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 1998 Report Share Posted August 11, 1998 In a message dated 8/11/98, 8:10:24 AM, eosinophilic gastroenteritis (AT) onelist (DOT) com writes: < > 's eos count went down(slightly) but not to a level that the GI found satisfactory. When the GI first diagnosed the EE he wanted us to go right to a feeding tube, he said we could try the Prednisone but that it was not a long term solution for . As we felt the feeding tube would be a terrible thing to do to we insisted on trying the Prednisone first. had some slight elimination of problems but not a turn around. 's dosage was 16 mg per day. 's GI felt very strongly that a feeding tube was the solution for us. He was correct. was on the tube(ng) for several months over the winter. As we reintroduced foods he did much better. We have done a very slow food challenge (about 1 food per week). Regarding reflux: was originally diagnosed with reflux. He was treated with many different medications but never got better. It was not until he got the diagnosis of EE and the proper treatment that we started to see any improvement. This is really puting it all in a nutshell but hopefully I have answered your question. For any of the parents concerned or scared of the feeding tube, I thought it would be horrible but it was not near as bad in reality. adjusted very well to it. Jen ( 11/7/95, eosinophilic esophagitis, food allergies, asthma) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 1998 Report Share Posted August 11, 1998 We took off of everything but corn and apples for a few weeks. Then while the tube was still in we started reintroducing foods one at a time. He has had very severe reactions to milk and eggs and mild reactions to strawberries and oranges. We never tried anything with lemon because he once had a very bad reaction to lemonaid. Both specialist have told us to assume nuts are a problem because my husband has had several anaphylactic(sp?) reactions to various types of nuts. We see the GI on 8/21. I am going to discuss another endoscopy with him. I will be very curious to see what the Eos. count is and how we are doing at this point. Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 1998 Report Share Posted August 11, 1998 Hi jen, Thanks for the info... that does explain it better for me. So... did you take off of all food for a whle and then reintroduce foods successfully? Are the docs hoping the allergies (or eos) will not return again once the foods are restarted? What makes the difference? I was not sure we would ever try to get Kody back on food... as many of you know allergies are funny things and some people will develop a reaction to whatever they are given. Then again, so little is know about IEE, we are each having to chart our own course. SJHarlow@... http://www.c4isr.com/harlow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 1998 Report Share Posted August 11, 1998 Good luck with the GI appt. I will be very interested in how the eos count is.... I would think that after a diet of apples and corn,,, the child would eventually develop an allergy to apples and corn.. at least that would mine would do! SJHarlow@... http://www.c4isr.com/harlow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 1998 Report Share Posted August 11, 1998 Do you actually mean I could be right? Yesterday I told the GI that after a diet of just hamburger and potatoes, it seems is allergic to them. Dawn ---------- > From: SJHarlow@... > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > Subject: [eosinophilic gastroenteritis] Re: 's GI visit today > Date: Tuesday, August 11, 1998 2:55 PM > > From: SJHarlow@... > > Good luck with the GI appt. I will be very interested in how the eos > count is.... > > I would think that after a diet of apples and corn,,, the child would > eventually develop an allergy to apples and corn.. at least that would > mine would do! > > SJHarlow@... > http://www.c4isr.com/harlow > > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
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