Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 My mom and I flew home from Cleveland today. I'm not feeling well and nothing has really been resolved. On the plus side I did get established with the Ped's GI at CCF and they had much better and realistic ideas for me. I have to return to CCF for 2 wks in Sept. for upper and lower manometry studies. I will also have biopsies taken for Celiac Disease. I was put back on a regular diet and taken off the Boost Plus. The GI doc. felt it was better for me to be on food. I'm being tapered off the Senokot onto Zelnorm and a double dose of Miralax. It's not working at all so far and that is really hard. I'm eating as well as I can and trying to mentally fight this battle and just force more food in even when I'm too full. There is still the possibility of trying Propulsid if the Zelnorm doesn't work as well as the Cecostomy after the motility studies are done. I'm still battling an UTI and have had bleeding which is very troubling after 2 antibiotics. I will be seeing my local doc. and having an ultrasound of my kidneys and bladder done. Appreciated your prayers and kind words while I was away. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Hope you feel better really soon. Glad to hear that you are back on a regular diet, the Boost had to be getting old. Which Ped. GI are you seeing at CCF? Grace has been going to Dr. Kaplan there, since she was about 6 weeks old. We have been very impressed with them. Dr. Kaplan has a very good force with her, she will not let things go. Actually it was her that ultimately led to Gracies Mito diagnosis. I really don't think there many doctors who would have went to the lengths that she did to figure out what was making her so sick. It is truly ironic that the answer was a few buildings away. I hope you have as much success with them as we have. Get better soon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Thank you . I saw a fellow by the name of Dr. Krishnan. He was GREAT! He works under Dr. Whiley and Dr. Hubertz (sp?) I saw her as well while I was inpatient. I'll be seeing a Dr. Stefan? for the motility testing. Not sure on the dates yet but it will be sometime during the weeks of Sept. 13th and Sept. 20th. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 Best wishes during your stay. I'll be having the baby that week, yipee. Grace has also seen Dr. Hupritz (I don't remember how to spell it either), she is very nice. I am unfamiliar with the other docs, they must be some of the residents. Even though Grace sees Dr. Kaplan, they are all familiar with her. It is joked that she is a VIP of the peds GI department, because she had them stumped for so long. If you get a chance to meet Gasan Wabeh (sp.?) he has an excellent bedside manner, and will go out of his way to answer any questions. He is Dr. Kaplans resident. All of the doctors also have great nurses. There are two in particular who are just the best. I cannot remember the ones name but the other is Jim. He has been known to call me at home, just to check on Grace and make sure she is well. I'm sure you will be quite pleased with them, they really have a realistic approach to dealing with this stuff. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2004 Report Share Posted August 16, 2004 ugh... i cant stand the SMELL of boost, Im impressed you managed to drink it so much! Im curious, as Im new here, what exactly your symptoms are? Im assuming you have some seriuos GI issues, just judging from this post... Im also assuming by your username that your about 20? Im 22, and its hard to find people even remotely the same age as me that are dealing with this! When were you diagnosed? Keely > My mom and I flew home from Cleveland today. I'm not feeling well and > nothing has really been resolved. On the plus side I did get established with the > Ped's GI at CCF and they had much better and realistic ideas for me. I have to > return to CCF for 2 wks in Sept. for upper and lower manometry studies. I > will also have biopsies taken for Celiac Disease. I was put back on a regular > diet and taken off the Boost Plus. The GI doc. felt it was better for me to be > on food. I'm being tapered off the Senokot onto Zelnorm and a double dose of > Miralax. It's not working at all so far and that is really hard. I'm eating > as well as I can and trying to mentally fight this battle and just force more > food in even when I'm too full. There is still the possibility of trying > Propulsid if the Zelnorm doesn't work as well as the Cecostomy after the motility > studies are done. I'm still battling an UTI and have had bleeding which is > very troubling after 2 antibiotics. I will be seeing my local doc. and having > an ultrasound of my kidneys and bladder done. Appreciated your prayers and > kind words while I was away. > > Quote Link to comment Share on other sites More sharing options...
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