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Brian's Mom, I am still praying for you as well, I hope things get better for your son soon. My Jillian is a different person then she was at the end of November, she has her appetite back, color, everything. Its still frustrating because we don't know what caused it, the main fix "Seems" to...

Yes somewhat, she definitely sees it and wonders why can't I be doing it, its one of the other tough parts of this, giving Jillian so much attention with all this and still trying to make sure the other twin and the 3 yr old get attention and just as much time and love....

Hi everyone, Update, I guess the dosage splitting has been key, we had our 2nd night of NO vomitting going for 3 tonight. We still haven't heard from Doctor, but now not to worried that its calmed down, but still kind of frustrating...either way... Crazy--- actually had a good talk with her...

Dex, Yes very much, I have a list of questions that I am sure will annoy our Doctor, but don't think I care and honestly the Doctor will be happy to answer my questions. She has been absolutely wonderful, she actually sat with me and my wife one day in her office for almost an hour talking...

Kat, Thanks for the info, unfortunately the Dr didnt' call today and none to pleased, but have a list of questions to ask her hopefully tomorrow. Jamie, We are not doing any supplements because she refuses anything we try to give her like that, and short of holding her down she won't take it...

Brian's Mom, Sorry to have made you cry, I am sure you are doing it enough on your own, as I am too :( HOpefully things get better for both of us very soon, you and your son will be in my thoughts and prayers as well... take care, scott k

How or what would they do to determine if it is or not?

Well just talked to my wife and they all over slept and running late for school which I am very happy about because that means she made it thru the night and actually woke up this morning and said her belly didn't hurt!!! Maybe splitting the dosage is/was the key, but I have cautiouse optmism...

Well you know more than I do, so I consider that a wealth of knowledge...

But she is still pooping, albeit it's pasty and soft like it was at beginning of this nightmare Not really headaches , every once in a while she will complain about belly pain but not like knock her down crying pain though.... She does have pain occasionally in her knee joints occasionally and...

Kat, Thanks for the reply. She had inflammation in terminal ileum. She also had villi atrophy in the upper area of bowels, can't remember what it's called, they thought she was a celiac first, but GF didn't help at all. So time will tell but I think we will be heading same direction w remi...

She is on Zoforan and that seemed to help at first, but she is still throwing up just about every day, but its never at the same time, just when we think we have made it thru the night she wakes up and throws up at 8am. we tried splitting the dosage today and at least for now it seems like she...

mami, Just sent you a message, Mark has been a wealth of knowledge to me and looks like you as well. I am in the same boat with my daughter and not having much luck with imuran at this point and not sure where our path is taking us... Glad to hear that someone is having some luck that has...

Thanks everyone, so still utterly confused. We are going to be talking to the Doctor again, because she is still throwing up once a day and got to believe its because the increased dosage of the imuran. I am afraid for what will come next... Guess my next question is about the remicaid/humira...

Mark, did your son try Imuran first? What exactly is 6mp? I asked our GI and she said its pretty much imuran but made with different stuff ???? And what is the Alsocol? (sorry not sure if that is right, can't see it while I am doing a reply) Just so desperate to get a right combo and feel...

Crazy, Thanks for the note, what I don't understand is our GI told us not to take imuran with milk or dairy of any kind as it would not allow the imuran to be absorbed properly. Thoughts?

Well it went okay, the only thing we really changed was the schedule of when we give meds to her, which does make sense now. Prevacid first thing in the morning on empty stomach Pred about 30 mintues later with breakfast (going to be tough because she doesn't really eat anything at breakfast...

Thanks everyone, I am truly hoping it is just that we weaned to quick off pred, I am not sure why, but I am so scared of keeping her on Pred to long, but after this week I don't think i will be. I will actually be more scared to wean her off again in the future, scared out of my mind that we...

She didn't ever throw up before on Pred though. I am afraid we weaned off Pred too fast and now dealing with flaring and needs to subside, just taking longer then I thought :( We don't really have anyone that checks up on us, we can call and will hopefully get a call back the same day, but we...

Mark, Thanks, yes I know they have checked her levels once around a 5 week point after being on Imuran and the good levels were barely on the chart, guess they look for something minimum of 200 (of whatever measurement they use) and then the bad levels were barely a trace. After that is when...