Yesterday, after a 5-day hospital stay that included a colonoscopy, endoscopy, 2 ultrasounds, MRI, CT scan and I don't even know how many blood tests, we got a final diagnosis of PSC and Crohn's for my precious, only child. She's all of 8 years old.
We were finally discharged yesterday, and I don't think I've slept more than an hour tonight. Obviously I've found this website, and a Facebook group. But I'm feeling hopeless, devastated, and absolutely overwhelmed.
In two weeks we will go back to the doctor (fortunately, we are near a major children's hospital and research center, Pittsburgh), where we will meet with both the pediatric gastroenterologist (who cared for us at the hospital) and a hepetologist. In the meantime, we have prescriptions for ursodeoxycholic acid and pentassa (spelling?). Her PSC is not characterized as autoimmune.
I'm sure we'll learn much more about the stage of her disease at the doctor's appointment. I take a small amount of comfort in that her liver function is, apparently, good -- elevated enzymes was the concern, and what prompted the further tests. Her Crohn's is apparently not that active now, as the inflammation wasn't visible on the scopes and only confirmed through biopsy.
The docs have been pretty reassuring, but they have told me of the high probability she'll need a liver transplant at some point. They say she should feel better rather quickly once on medication. Everything I see online seems considerably more discouraging.
They pretty much predicted that she had IBD when we were sent for the colonoscopy/endoscopy, so I was prepared for that. But no one can adequately prepare themselves for something like this.
I'm turning to you (especially parents of kids with this disease) for words of encouragement and hope, especially to parents. Please help me. I'm not sure how to even go on from here.