frustration
my daughter just turned 16 and was diagnosed in january we are about a 9 hour drive from the children's hospital and have been there three times since jan. She has been on imuran, pentasa, entocort , azathoiprine and now steroids and mercaptopurine. she learned how to tube feed on her own a couple of months ago but the hospital prescribed the azathoiprine incorrectly, she was going great the first week and then we did what the prescription said and upped her dose on week two and three she was so nausious from that and had to get several tests done to find out she should have only been on the smallest dose with no increases on it so she went to steriods and mercaptopurine and she has side effects from both consisting of her crohns symptoms still as well as headaches, sharp pains in her head and pain in her chest and trouble breathing at times and the childrens hospital wonders why i would like to see a specialist closer to home rather that go and see them face to face to just change her meds again. and they tried to blame it on us for not contacting them every week to tell them she is not getting better (my answer to that was are you not reading the blood tests she gets done every two weeks that would tell you if she is getting better or not the nurse said oh we get lots of results back every day) OMG why order the test if you are not going to look at it and if i was a doctor i would not have messed up the prescription that she was on previously. now they are thinking of putting her on remicade how drastic is that? i don't know i do know it is pricey but thats about all i do know& she is scared to go on something like that she was my hero when she learned the tube feeding .
thanks for letting me vent
my daughter just turned 16 and was diagnosed in january we are about a 9 hour drive from the children's hospital and have been there three times since jan. She has been on imuran, pentasa, entocort , azathoiprine and now steroids and mercaptopurine. she learned how to tube feed on her own a couple of months ago but the hospital prescribed the azathoiprine incorrectly, she was going great the first week and then we did what the prescription said and upped her dose on week two and three she was so nausious from that and had to get several tests done to find out she should have only been on the smallest dose with no increases on it so she went to steriods and mercaptopurine and she has side effects from both consisting of her crohns symptoms still as well as headaches, sharp pains in her head and pain in her chest and trouble breathing at times and the childrens hospital wonders why i would like to see a specialist closer to home rather that go and see them face to face to just change her meds again. and they tried to blame it on us for not contacting them every week to tell them she is not getting better (my answer to that was are you not reading the blood tests she gets done every two weeks that would tell you if she is getting better or not the nurse said oh we get lots of results back every day) OMG why order the test if you are not going to look at it and if i was a doctor i would not have messed up the prescription that she was on previously. now they are thinking of putting her on remicade how drastic is that? i don't know i do know it is pricey but thats about all i do know& she is scared to go on something like that she was my hero when she learned the tube feeding .
thanks for letting me vent