Guest guest Posted June 8, 1998 Report Share Posted June 8, 1998 How is everyone? I haven't heard from anyone in a while but I have some updates on First, Sharon, I received the polycose today. Thanks so much, I am anxious to try it. For some reason our GI doc always brushes me off about it so I hope I don't get in " trouble " for doing it on my own. Secondly, unfortunately our Prednisone weaning is not going well at all. 's stools have increased a lot and the increase in Zantac and Gastrocrom don't seem to be making a difference. The GI doc keeps telling me that Gastrocrom has been proven to work really well after 3. is close to there but I wonder if size makes a difference too. looks like an 18 months old, I think that has to make a difference. Fortunately, none of this seems to affect him emotionally or developmentally. He now counts to 15 and says A-F. I think that is pretty good for 31 months. He talks up a storm. He continues to amaze the docs who told me after almost 20 stays in the hospital he will definitely be delayed. Another question, does anyone have bottom pain in their child? has been complaining almost constantly of butt pain. His bottom is not broken out and is not even red. We have a visit to the GI on Thursday and will get the results of our nutritional evaluation of our 3 day diet. I am anxious to see how he does. We started giving 2 Tums a day for calcium but we are having problems cause he no longer sees them as " candy " , shucks! Also, I wanted to ask about drinking. can't seem to stomach anything but 7up and water. He could stomach formula but he won't touch it. I have tried kool-aid, Juicy juices, etc. and all give him bad diarrhea. I was thinking it may be a problem with the sugar but 7up has sugar and it doesn't bother him at all, I was just thinking as I am typing this, maybe it is flavor or coloring? What do you guys think??? Well I hope all is well. BTW, we are continuing with the Pred weaning despite the probs to see if some of the probs are Pred. Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 1998 Report Share Posted June 8, 1998 In a message dated 98-06-08 15:29:44 EDT, you write: << Also, I wanted to ask about drinking. can't seem to stomach anything but 7up and water. He could stomach formula but he won't touch it. I have tried kool-aid, Juicy juices, etc. and all give him bad diarrhea. I was thinking it may be a problem with the sugar but 7up has sugar and it doesn't bother him at all, I was just thinking as I am typing this, maybe it is flavor or coloring? What do you guys think??? >> Hi Dawn, When you talk to your GI you may want to ask him if really even needs the juice. I have seen shows and read articles saying that water is good. Alot of these juices are so loaded with sugar and artificial additives. is slowly drinking more water and less juice. He does drink apple juice but I dilute it 1/2 juice 1/2 water. Also, I have seen banana juice in the store, I wonder if this would have less of a laxative effect. Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 1998 Report Share Posted June 8, 1998 In a message dated 98-06-08 15:29:28 EDT, you write: << First, Sharon, I received the polycose today. Thanks so much, I am anxious to try it. For some reason our GI doc always brushes me off about it so I hope I don't get in " trouble " for doing it on my own. >> Dawn: You are welcome. I will be in New York the next 2 days working. I will have my lap top but dont know how much I will be around. Hope everyone has a good week. Clayton is having another ph probe next tuesday followed by our monthly visit with Dr. on Wednesday. Love, Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 1998 Report Share Posted June 8, 1998 hi sharon, you are on line. I am soo sad. I spoke with a doc in NY today and she basiclly scared the wits out of me. Spencer is loosing weight and she says that he needs to be on TPN for 3 months npo. I will forward my email to dr. Putnam please tell me what you think. I will probably be in Pittsburgh at the ronald mcdonald house for at least a month or months so I am sure we will have time to get together. Please tell me what you think and I really need someone to talk to if you have the time. Where ever you are when you have a second call me at work. You said you would be gone to NY for a while. or i can call you. Or just email me if you can. I need to talk things out. Love, ---------- > From: SDidinsky@... > To: eosinophilic gastroenteritis (AT) onelist (DOT) com > Subject: [eosinophilic gastroenteritis] Re: Happy Monday > Date: Monday, June 08, 1998 10:29 PM > > > > In a message dated 98-06-08 15:29:28 EDT, you write: > > << > First, Sharon, I received the polycose today. Thanks so much, I am anxious > to try it. For some reason our GI doc always brushes me off about it so I > hope I don't get in " trouble " for doing it on my own. >> > Dawn: > > You are welcome. I will be in New York the next 2 days working. I will have my > lap top but dont know how much I will be around. Hope everyone has a good > week. > > Clayton is having another ph probe next tuesday followed by our monthly visit > with Dr. on Wednesday. > > Love, > Sharon > > ---------------------------------------------------------------------------- - > Quote Link to comment Share on other sites More sharing options...
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