Guest guest Posted February 5, 2000 Report Share Posted February 5, 2000 shana - I'm afraid there really arent any good fast hard answers to this yet. Just when I think we've found the answers for us, WHAMO CHANGO, the symptoms return. I thought we had the " answer " in tube feeding everyone Elecare. However, I think I posted to the list a couple of weeks ago, that I had an anaphylactic reaction to it and now have to be on STEROIDS just to take the FORMULA!! UGH. Even at this, I am having a great deal of trouble tolerating feeds and am getting less than 1/2 of what I should be. I am seeing a group of physicians at the University of Virginia on MOnday. I'll keep you updated. In the meantime, you'll just have to do what your heart and head lead you to and hope for the best. I KNOW it is TOUGH. We just have to keep each other updated, stay informed and stay super vigilant. Steph. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2000 Report Share Posted February 6, 2000 In a message dated 2/6/00 4:16:20 PM Pacific Standard Time, vkmaiorano@... writes: << Does anybody know how Spencer is? I tried calling several days ago and they weren't in the room and I haven't tried again. >> Could you post their phone number? Stupid me, I accidently deleated it. Thanks, 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 February 6, 2000 Report Share Posted February 6, 2000 Steph- YOU HAVE A BEAUTIFUL FAMILY!!! I soooooo wish you the best in working with the docs and figuring out what is going to work for everyone. What troopers you and your kids are! In the future, people with this disease will no doubt benefit from the experiences of you and your family - and probably have already. God bless. Cindy - Sorry to hear about 's tube. Is there actually a chance that she's outgrown her problem? Luke shows no signs whatsoever of outgrowing this soy/milk " intolerance " . The slightest bit and he just throws up. It's do disturbing. I will continue to hope, but it isn't going to happen by the time he's two; I know that. Does anybody know how Spencer is? I tried calling several days ago and they weren't in the room and I haven't tried again. Kathy (mom to Luke, 16 mos. EC? or just food intolerances????) > Steph wrote: > > > > shana - > > I'm afraid there really arent any good fast hard answers to this yet. > Just when I think we've found the answers for us, WHAMO CHANGO, the > symptoms return. > > I thought we had the " answer " in tube feeding everyone Elecare. > However, I think I posted to the list a couple of weeks ago, that I > had an anaphylactic reaction to it and now have to be on STEROIDS just > to take the FORMULA!! UGH. Even at this, I am having a great deal of > trouble tolerating feeds and am getting less than 1/2 of what I should > be. > > I am seeing a group of physicians at the University of Virginia on > MOnday. I'll keep you updated. In the meantime, you'll just have to > do what your heart and head lead you to and hope for the best. I KNOW > it is TOUGH. We just have to keep each other updated, stay informed > and stay super vigilant. > > Steph. > ---------------------------------------------------------------------- > [ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2000 Report Share Posted February 6, 2000 Kathy, I heard through another mom that talked to - no real findings yet. Pretty much still trying to figure it out. Spencer and Kody are very much alike and I'm afraid that is the road it will always be - I'm going to try her again tomorrow. Steph. Re: [eosinophilic gastroenteritis] confused what do I do > > >Steph- YOU HAVE A BEAUTIFUL FAMILY!!! I soooooo wish you the best in >working with the docs and figuring out what is going to work for >everyone. What troopers you and your kids are! In the future, people >with this disease will no doubt benefit from the experiences of you and >your family - and probably have already. God bless. > >Cindy - Sorry to hear about 's tube. Is there actually a chance >that she's outgrown her problem? Luke shows no signs whatsoever of >outgrowing this soy/milk " intolerance " . The slightest bit and he just >throws up. It's do disturbing. I will continue to hope, but it isn't >going to happen by the time he's two; I know that. > >Does anybody know how Spencer is? I tried calling several days ago and >they weren't in the room and I haven't tried again. > >Kathy (mom to Luke, 16 mos. EC? or just food intolerances????) > >> Steph wrote: >> >> >> >> shana - >> >> I'm afraid there really arent any good fast hard answers to this yet. >> Just when I think we've found the answers for us, WHAMO CHANGO, the >> symptoms return. >> >> I thought we had the " answer " in tube feeding everyone Elecare. >> However, I think I posted to the list a couple of weeks ago, that I >> had an anaphylactic reaction to it and now have to be on STEROIDS just >> to take the FORMULA!! UGH. Even at this, I am having a great deal of >> trouble tolerating feeds and am getting less than 1/2 of what I should >> be. >> >> I am seeing a group of physicians at the University of Virginia on >> MOnday. I'll keep you updated. In the meantime, you'll just have to >> do what your heart and head lead you to and hope for the best. I KNOW >> it is TOUGH. We just have to keep each other updated, stay informed >> and stay super vigilant. >> >> Steph. >> ---------------------------------------------------------------------- >> [ Quote Link to comment Share on other sites More sharing options...
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