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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
Don't ever feel bad about venting... this is the place to do it! I know it feels awful--as a parent you want to make things all better but this is mostly out of your control. I can tell you that I've heard great things about 6-mercaptopurine, but in my understanding it is a slow acting drug that can take awhile to work. I initially had some side effects from 6-MP at the beginning but those are subsiding. I am also on Remicade and I haven't had any side effects, that I know of, from it. My father is also on Remicade and it is working like a charm for him and he hasn't had any side effects. Honestly, if she does go on Remicade, it could be the best thing for her. For many people unlike w/ 6-MP, Remicade acts quickly and although you have to sit for a few hours to get the IV, you don't have to take pills every day.

Let us know how things work out for y'all. I hope she gets to feeling better soon:)
Hi timmie,

I understand your frustration completely. It is so hard when a loved one is sick and you can do nothing about it and it seems as though the doctors are just giving you the run around. My family is experiencing a very similar situation with my father at the moment. He is currently in Cleveland Clinic (4 hours away for me and 2 hours for my mom and brother). They seem to have absolutely no idea how hard it is on a family to be staying in hotel rooms, traveling back and forth long distances to balance work and our other families and they just act like they are doing us the big favor by treating him (not that we don't appreciate their specialty expertise, but they just up and delayed his surgery by 6 days...easy for them!) Anyway, if you feel that seeing a specialist closer to home might help, I would say go for it! Traveling that distance all of the time is hard on your family and your daughter. It can't hurt.

Regarding the Imuran, I had a similar experience with it. My doc had upped my dosage to 150mg which made me very nauseous and weak. A different doctor told me that that dosage was too high for most people my size and dropped me back down to 50mg, which does not seem to bother me. As far as the Remicade goes, I think that most of us here can understand you concerns. I was terrified at first, but I had no problems with it at all. In fact, it gave me so much energy that I hadn't felt in a long time. It has been a wonderful drug for so many people on here. There is a thread called Remicade Club that has a ton of info. I would suggest reading through it and posting questions if you have them. Everyone here is very willing to share their experiences to help others.

Your daughter sounds like an amazing and strong young lady. I wish you all the best!
Just wanted to say that I am sorry for all your family is going through right now. Remicade is a wonderful drug. I hope it works for her.
Vent away!!! You have a major right to!!! I hope you find her some relief, that will be good for both of you. She is my hero too! I am very happy for her that she has a parent who cares so much for her. Good luck on her next steps. Sue