I think I am going a little crazy. Hi, I am new here 
I have a son who is 13 yrs old and was diagnosed exactly a year ago with CD. It is pretty severe. Hospitalized for a week, fistula's, extreme weight loss... The fistula is almost completely healed, but he's had a few set backs. The fistula came back for a short period, but it is now almost gone and no pain. But he is having loose bloody stools now and so we had to have more labs done today. And now, I guess I'm just confused about the treatment options. He is on azathioprine and was on Prednisone also, but they took him off the Pred and lowered the dosage of azathioprine and then, after the fistula and another flare up, they upped the dosage of azathioprine... and now they are opting for Remicade again. The Pediatric GI has been pushing Remicade ever since I first met her...
I didn't want to do it at first, and I still am very hesitant because of many, many reasons... one of which is the cost. Insurance may cover some, but surely it will not cover one hundred per cent. Then there is the distance we have to travel to see this doctor, a three hour trip one way. I've missed more work than I can afford to, lost one job, with missing more work to take him to the doctor today I am most likely on my way out the door at my current job, and I am in no position to lose this job or take time off of work. I have 4 kids and 2 step kids (Ages: 17, 16, 13, 12, 9, & 2) and financially we are struggling already. Medical bills are already through the roof, prescriptions (for many of us, not just my son with Crohn's) and the cost of driving 3 hours to get a 3 hour infusion and then driving 3 hours to come back home, it just doesn't seem feasible.
I want what is best for my son, but I also don't want to tie him into a medication that he may not be able to afford once he is an adult himself, let alone one that may cause so many side effects and time off of school and cause us to be unable to feed our family or lose our home.
I have tried to read about this and I get so confused. I want to be able to talk with this doctor and let her know that I want him better, I want him to not have as many complications, but I also want to try as many forms of less invasive treatment options as possible before having to take the Remicade step. For anyone who has extensive knowledge of this disease or has just done this for so long they are now an expert, could you please give me a little advice on how to go about this or do I have no choice?
I feel like we have only tried the one pill and since she has tried to push Remicade from the very beginning, I sort of feel there is some ulterior motive or something. Why wouldn't we want to do another form of treatment that is less costly, less time consuming, and less of a hassle? If we could do the infusions closer to home, I don't think that it would be AS big of an issue, but since she insists that we make the trip there for every one of them, I just can't imagine being able to do this financially or even mentally or emotionally.
Any suggestions would be greatly appreciative.
I have a son who is 13 yrs old and was diagnosed exactly a year ago with CD. It is pretty severe. Hospitalized for a week, fistula's, extreme weight loss... The fistula is almost completely healed, but he's had a few set backs. The fistula came back for a short period, but it is now almost gone and no pain. But he is having loose bloody stools now and so we had to have more labs done today. And now, I guess I'm just confused about the treatment options. He is on azathioprine and was on Prednisone also, but they took him off the Pred and lowered the dosage of azathioprine and then, after the fistula and another flare up, they upped the dosage of azathioprine... and now they are opting for Remicade again. The Pediatric GI has been pushing Remicade ever since I first met her...
I didn't want to do it at first, and I still am very hesitant because of many, many reasons... one of which is the cost. Insurance may cover some, but surely it will not cover one hundred per cent. Then there is the distance we have to travel to see this doctor, a three hour trip one way. I've missed more work than I can afford to, lost one job, with missing more work to take him to the doctor today I am most likely on my way out the door at my current job, and I am in no position to lose this job or take time off of work. I have 4 kids and 2 step kids (Ages: 17, 16, 13, 12, 9, & 2) and financially we are struggling already. Medical bills are already through the roof, prescriptions (for many of us, not just my son with Crohn's) and the cost of driving 3 hours to get a 3 hour infusion and then driving 3 hours to come back home, it just doesn't seem feasible.
I want what is best for my son, but I also don't want to tie him into a medication that he may not be able to afford once he is an adult himself, let alone one that may cause so many side effects and time off of school and cause us to be unable to feed our family or lose our home.
I have tried to read about this and I get so confused. I want to be able to talk with this doctor and let her know that I want him better, I want him to not have as many complications, but I also want to try as many forms of less invasive treatment options as possible before having to take the Remicade step. For anyone who has extensive knowledge of this disease or has just done this for so long they are now an expert, could you please give me a little advice on how to go about this or do I have no choice?
I feel like we have only tried the one pill and since she has tried to push Remicade from the very beginning, I sort of feel there is some ulterior motive or something. Why wouldn't we want to do another form of treatment that is less costly, less time consuming, and less of a hassle? If we could do the infusions closer to home, I don't think that it would be AS big of an issue, but since she insists that we make the trip there for every one of them, I just can't imagine being able to do this financially or even mentally or emotionally.
Any suggestions would be greatly appreciative.
