Emily had been on prednisone for a month to help calm down all the inflammation in her gut - and it sort of worked, but has since worn off. So she's on a stronger steroid starting today (Entocort) for about 2-4 weeks (yay...kids on 'roids are a real blast). Its typically used to treat adults who have Crohns disease, so hopefully it should work. If not, I'm going to start a collection for toilet paper because you seriously can't imagine how much that child uses in a month.
Should have the second AE test results back by her 5th bday in mid-October. I'm trying to be really positive but she's just not healthy right now and isn't feeling good at all. She's refusing to eat, is very pale and getting pretty lethargic. It worries me but we are doing all we can until the results come back. Sounds like the preferred treatment for AE is a chemotherapy drug, so that's at least better (I think??) than a bone marrow transplant. I'm still learning.
After a conversation with the GI doctor's office today, it appears she is leaning toward Emily having Crohns Disease. We need to wait to see how she handles this new drug for 2-4 weeks, and then we will likely be scheduling for her to have a repeat endoscopy and colonoscopy (and trust me, you haven't lived until you have had to do 'bowel prep' for a colonoscopy...). Her blood test results are not currently showing that she has measurable inflammation in her gut, but since her IBD 7 test results were questionable, she could be developing Crohns (meaning it is still in a microscopic stage).
Whether this Crohn's is in addition to or in lieu of the AE we still don't know.
Bone density tests for both girls came back perfect, so that was a big WHEW. Really didn't need that one to be bad, the treatment wasn't pretty.
Ally has strep, which means we get two quiet days at home...and for that I am most grateful!!