I'm so sorry about your daughter's diagnosis. You have come to the right place - you will find tons of support and good advice here. My child was diagnosed with crohns at age 12 - 15 years ago - so I guess you could say, I've seen quite a bit! I would have to say, that reading your post, I thought to myself, that your daughter is "under medicated". Not sure if they are waiting for more test results, but if she has confirmed crohns, then she needs to be on more that just prednisone. She cannot stay on that for very long, so you would need to put her on some meds that would have kicked in by the time you wean her off the Prednisone. The 6 MP can take up to 12 weeks to start working. For me personally, in the early days, feeding my child with an NG tube was life changing. You mentioned that your daughter has lost quite a bit of weight. So did my daughter in the beginning - and yes, I remember how upsetting that was. The NG tube is a way of nourishing your daughter, and allowing her to have some bowel rest at the same time. It will aid in her vital growing years. My child's weight gain was nothing short of miraculous, after we started the tube feedings. After a while, you can feed her overnight while she sleeps.
The 2nd thing that changed our life, was Remicade. It was a wonder drug for us. I know if you read up, it will tell you all kinds of scary stuff, but sometimes we have to make hard decisions. My child was on Remicade for many many years, and never had any problems. Whatever you do, make sure she never eats popcorn, which I think is the most destructive food for their gut. I want you to know, that in the beginning, it is the hardest time for everyone involved. But, now that you know what you are dealing with, things will improve, and you know what to watch out for. Please keep in touch, and let us know how your trip to Michigan goes.
Can I get some feedback as to how your children are coping with the diagnosis and how long until they started to feel 'normal' again? Thank you!
