Guest guest Posted February 22, 2003 Report Share Posted February 22, 2003 , So glad you made it! Was praying the weather would clear for you. Sorry you did not get all the answers you were seeking. Glad your back home and hoping you have a great weekend! Horsley Back from Cleveland. Well, we did manage to get to Cleveland in spite of all the snow. The flight was reasonably calm and uneventful, thankfully. To be honest, I was disappointed with the visit in itself. Dr Cohen said he did not feel GI there would have any more to offer then what we already have. He recommended we dilute her feeds and not to push oral feeding, as it seems to make her pain increase. Of course she is growing and looks great so we have to just live with it. He said she obviously has a slow GI transit time, which is common in mito patients. Thats really hard to explain to a 6 year old every night when they are crying with belly pain, you know. He did tell us he only wanted her on the iron for 6 to 8 weeks total. He said kids with mito disorders, its not unusual for them to be anemic. He said then have her labs checked and if she gets more anemic, to consider IV iron therapy. He talked a bit about all the infections she always seems to have.( cellulitos, bronchitis, ongoing pink eye, fungal infection at the gtube site, ect) Again he said there was no cure for this and to treat infections appropriately. I don't know, maybe I am just looking for answers that don't exist....I just thought I would share with you all what we learned ( or didn't learn) ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
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