I had hoped to have more of an update for Emily by now (my delay has been because I assumed to have SOME answers by now, but to no avail). We are at week 5 of waiting for the 2nd round of AE test results. I did actually find out some interesting and positive news about that test that I am hanging onto for dear life. Apparently if her AE test comes back exactly the same as it did before (meaning a positive test, but only in the first 2 dilutions of the test, not all 6), it means that she has somehow developed an antibody to that disease, which would always cause her to test positive for it, even though she wouldn't technically have the disease. This is a crazy concept to wrap your head around, I know...but our pediatrician has a 6 yr old boy she cares for who tests positive for HIV but he doesn't have the disease. So, I am obviously praying this is the case with Emily. Crazy, yes, but at this point I'm just praying for a miracle here.
She is on a second steroid now. The Prednisone she was on did nothing, so they moved her to an adult Crohn's disease steroid, hoping it would keep her diarrhea under control. All it has done is cause her daily migraines and she has started having rage temper tantrums again. I called the doctor's office yesterday after putting up with this for 10 days and begged to please give me the ok to wean her off of it. She's had diarrhea for the past 3 days, so clearly this one has stopped working also.
We are likely going to have to get her scoped from both ends now. Her last round of test results indicates she is developing Crohn's disease as well...however it is likely in a microscopic state at this point.
That is about it. Still waiting as usual...
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