Guest guest Posted June 27, 1999 Report Share Posted June 27, 1999 I am still here.... - (mom to Riley-esg and Brittany) > >Reply-To: eosinophilic gastroenteritis (AT) onelist (DOT) com >To: " eos support " eosinophilic gastroenteritis (AT) onelist (DOT) com> >Subject: [eosinophilic gastroenteritis] quiet >Date: Sun, 27 Jun 1999 13:07:33 -0700 > > > >This list is really, really quiet. > >Is anybody out there? > > (eos esophagitis/GT, former TPNr) >(Mom to 5 with EE/GTs; , , Korey, Kody (TPN), Killian > > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 1999 Report Share Posted June 27, 1999 We are here! It has been really quiet. Are you still seeing Dr. Bornstein or is he gone now? We just started BJ on the Flonase and the Clariton for his allergies. Dawn Transcription wrote: > > > This list is really, really quiet. > > Is anybody out there? > > (eos esophagitis/GT, former TPNr) > (Mom to 5 with EE/GTs; , , Korey, Kody (TPN), Killian > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 1999 Report Share Posted June 27, 1999 Hi Dawn, Jeff Bornstein leaves in about 10 days. We have been trying to wean ourselves from him for about 6 weeks, but it has been really rough going. We had decided to go with a civilian peds GI, who was closer. He treated Kody during his GI bleed back in February and had done an excellent job at that time. Unfortunately, as we have tried to make the switch, he's turned out to be farrrr from what I want in a doc. He doesn't return calls, has left me and our nurses in quite a state many times (for example, he was supposed to call us back on Friday and let us know what to do about Kody's nausea/retching/gagging from the Erythromycin he had started for motility. He never called back and we have no idea what to do about it. We had to really bug the #$()* out of him to get new standing orders for re-hydrating Kody (he gets dehydrated quickly and often there were no specific orders on how/when to replace and with what) He was really really nasty to our evening nurse while I was gone to a funeral, screaming at her and telling her to get D51/2 NS and he " didn't care how she got it, just get it and give it to him " . She was left trying to call OTHER docs to help her get the fluids when HE should have been the one getting it for her. ERRRRRR. He is about the only other fish in town, however. If I can't work things out with him, I'll be forced to go with someone else at Walter . At this point neither is appealing. The good news is that for me and three of the four tube-fed kids, we are doing excellent. We just get elemental formula through our GTs and feel great. When they biopsied the kids last week (they pulled their PEGs and replaced with standard GTs) there were NO eos, again, still. All this since starting elemental diets months ago. Nothing except high dose prednisone has done this for us up to this point. Now, if we could just get Kody to cooperate. He is having a terrible time. Not able to tolerate any enteral feeds at all (100% TPN dependent). I am beginning to wonder if there isnt a behavoiral component, because he will start to gag before we even get GT formula into his gut for a trial. He just sees it and starts gagging. Also, his motility testing at Pittsburgh was not normal, but it was not horrible either. He should be able to tolerate SOME enteral feeds. Frustration. I really wish Bornstein wouldn't leave, but, it is going to happen and very soon. As a matter of fact, he is going to settelement tomorrow on his new house in Florida, then flying back to finish up here. Depressing. Really, really depressing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2001 Report Share Posted June 16, 2001 This list is rather quiet today. Me thinks too many people are enjoying themselves at the conference! Trisha SAHM to 3 boys Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2001 Report Share Posted June 16, 2001 This list is rather quiet today. Me thinks too many people are enjoying themselves at the conference! Trisha SAHM to 3 boys Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2001 Report Share Posted June 16, 2001 > This list is rather quiet today. Me thinks too many people are > enjoying themselves at the conference! > > Trisha > SAHM to 3 boys Methinks as well! I hope they tell us all about it when they get back... Phyllis (BTW, I sent some stamps for your son a couple of weeks ago, probably the ones you posted to say you didn't know who they were from. After I mailed them, I realised I hadn't put a return address on the envelope. I hope they're good ones ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2001 Report Share Posted June 16, 2001 > This list is rather quiet today. Me thinks too many people are > enjoying themselves at the conference! > > Trisha > SAHM to 3 boys Methinks as well! I hope they tell us all about it when they get back... Phyllis (BTW, I sent some stamps for your son a couple of weeks ago, probably the ones you posted to say you didn't know who they were from. After I mailed them, I realised I hadn't put a return address on the envelope. I hope they're good ones ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2001 Report Share Posted June 16, 2001 > This list is rather quiet today. Me thinks too many people are > enjoying themselves at the conference! > > Trisha > SAHM to 3 boys Yes usually I almost dread coming on to this list on the web after sabbath because there are at least 3 screens full of msgs to read, this time only half of one screen! I was stunned, and I must confess, a bit relieved too! I couldn't go to conference due to Sabbath. Fridays are sabbath eve and *very* tight as I have to be home in time to prepare etc, and Saturdays are completely out. I hope everyone enjoyed themselves at the conference! Ruthie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2001 Report Share Posted June 16, 2001 > This list is rather quiet today. Me thinks too many people are > enjoying themselves at the conference! > > Trisha > SAHM to 3 boys Yes usually I almost dread coming on to this list on the web after sabbath because there are at least 3 screens full of msgs to read, this time only half of one screen! I was stunned, and I must confess, a bit relieved too! I couldn't go to conference due to Sabbath. Fridays are sabbath eve and *very* tight as I have to be home in time to prepare etc, and Saturdays are completely out. I hope everyone enjoyed themselves at the conference! Ruthie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2001 Report Share Posted June 17, 2001 Had a lovely time thank you. Lots of friendly faces, some brilliant speakers (I want to marry Rick Porter and have his babies!!!!!) and as usual a really good atmosphere and loads of freebies. Great stuff. Lesley ANT, tr BFC, Mother, Wife, Friend, Mender of Broken Hearts, Keeper of Secrets, Chauffeur, Cook, Maid, Writer. Overweight, Over thirty, Over here in Worthing.. " Believing Oneself to be perfect is often the sign of a delusional mind! " Star Trek. Re: Quiet > > > This list is rather quiet today. Me thinks too many people are > > enjoying themselves at the conference! > > > > Trisha > > SAHM to 3 boys > > Yes usually I almost dread coming on to this list on the web after > sabbath because there are at least 3 screens full of msgs to read, > this time only half of one screen! I was stunned, and I must confess, > a bit relieved too! > > I couldn't go to conference due to Sabbath. Fridays are sabbath eve > and *very* tight as I have to be home in time to prepare etc, and > Saturdays are completely out. I hope everyone enjoyed themselves at > the conference! > > Ruthie > > > > > > > > > > > > *** NCT enquiry line - 0 *** > > Live chat http://www.yahoogroups.com/chat/nct-coffee > > Have you found out about all the other groups for the NCT online? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2001 Report Share Posted June 17, 2001 Had a lovely time thank you. Lots of friendly faces, some brilliant speakers (I want to marry Rick Porter and have his babies!!!!!) and as usual a really good atmosphere and loads of freebies. Great stuff. Lesley ANT, tr BFC, Mother, Wife, Friend, Mender of Broken Hearts, Keeper of Secrets, Chauffeur, Cook, Maid, Writer. Overweight, Over thirty, Over here in Worthing.. " Believing Oneself to be perfect is often the sign of a delusional mind! " Star Trek. Re: Quiet > > > This list is rather quiet today. Me thinks too many people are > > enjoying themselves at the conference! > > > > Trisha > > SAHM to 3 boys > > Yes usually I almost dread coming on to this list on the web after > sabbath because there are at least 3 screens full of msgs to read, > this time only half of one screen! I was stunned, and I must confess, > a bit relieved too! > > I couldn't go to conference due to Sabbath. Fridays are sabbath eve > and *very* tight as I have to be home in time to prepare etc, and > Saturdays are completely out. I hope everyone enjoyed themselves at > the conference! > > Ruthie > > > > > > > > > > > > *** NCT enquiry line - 0 *** > > Live chat http://www.yahoogroups.com/chat/nct-coffee > > Have you found out about all the other groups for the NCT online? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2001 Report Share Posted June 17, 2001 > Had a lovely time thank you. Lots of friendly faces, some brilliant > speakers (I want to marry Rick Porter and have his babies!!!!!) and > as usual a really good atmosphere and loads of freebies. Great stuff. Awww *SULK* Not fair! What freebies? *MEGA SULK* and who is Rick Porter? *TREBLE SULK* :-))) Ruthie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2001 Report Share Posted June 17, 2001 > Had a lovely time thank you. Lots of friendly faces, some brilliant > speakers (I want to marry Rick Porter and have his babies!!!!!) and > as usual a really good atmosphere and loads of freebies. Great stuff. Awww *SULK* Not fair! What freebies? *MEGA SULK* and who is Rick Porter? *TREBLE SULK* :-))) Ruthie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2006 Report Share Posted February 20, 2006 Where is everyone today, not out walking in this cold damp weather?? I went and filled the gas tank and that was enough for me. thought I would walk but darn its cold. Hope we all have good weigh ins this week. Hugs, Jackie Quote Link to comment Share on other sites More sharing options...
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