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Ack! I missed the call from the nurse! And she left a voicemail saying that the FC is elevated, but not hugely elevated, but didn't give me any numbers. I do like to have actual values. Anyway, the doctor has prescribed Flagyl for two weeks (??). But we are supposed to go ahead and decrease...

Quick update: we got the sample in for fecal calprotectin. L's appointment yesterday was just a liver follow up, and everything looks good. They did a hepatic panel and everything was in normal range. If the fecal calprotectin test is normal we will wean prednisone again. Also, she has gained...

Thanks, everybody! I will definitely go ahead with the calprotectin test.

And that's a great idea about seeing if they can email me the orders. I am going to ask if they can do that if (when) it comes up again.

Can they do the fecal calprotectin test on formed stool? I thought they only did it for diarrhea.

I finally got the orders for L's stool tests (mailed because our local hospital always wants paper orders for some reason), but L stopped having diarrhea in the meantime. So, yay! But I feel kind of silly for not waiting a little longer. She has been on the azathioprine for almost eight weeks...

I feel a little funny posting here, because my daughter's symptoms are so mild, and we have only just gotten our diagnosis, and the liver problems seem to be what the doctors have keyed in on. Also, I have not been supporting others, with the feeling that everyone else is so much more...

L has started weaning, but it is slow, about a 3 mg drop every three weeks. The doctor said they don't want her on it more than six months, but it will be dependant on her liver enzymes staying low and the azathioprine being effective, both for the AIH and IBD. She is currently taking 15 mg, and...

I think the diagnoses are starting to sink in. My daughter is so cheerful and she is taking everything about as well as I could hope for, but I am starting to just feel really sad. She is about to start first grade, and she was the littlest one in her class last year and has not grown a lot...

No, she didn't seem to think that was a consideration. L has blood work on Monday so if the azathioprine is affecting her liver negatively, which might contribute to diarrhea, we will know something. Funny how the drug we are giving her to keep the AIH and IBD down can cause liver damage. I...

Thanks for asking. Yes, I spoke with the nurse. She determined it was not cholangitis (which is a bacterial infection in the bile ducts, and a possible complication of PSC) and then was not concerned. She thought maybe it was a passing stomach virus. I don't know. Yesterday L's stools were...

Thanks, I went ahead and left a message with the nurse. I really want L off the Prednilosone, but I want the AIH and IBD under control even more. :\

So over the last three days L's stools have gotten looser, and last night she had diarrhea in the middle of the night. Later she woke up and asked for water and said her knee hurt badly and wanted Tylenol and was feeling very cold (she was shaking). It is quite cool in our house overnight and...

Thanks, everyone. I feel reassured. I really hope the Imuran continues to keep the IBD under control as well as the AIH, since she has to be on the Imuran anyway.

Hi! I posted here awhile ago in the undiagnosed kids thread. My six-yr-old daughter has since been diagnosed with Primary Sclerosing Cholangitis, Autoimmune Hepatitis, and PSC-related IBD. Right now we are trying to knock her AIH into remission (the treatment for which also is clearing up...

Hoo doggy! (Can you tell I am from Wyoming?) I heard from the doctor yesterday. In addition to AIH, L has primary sclerosing cholangitis. The doctor said that the biopsies did not show specific evidence of UC or CD, but that inflammatory bowel disease is associated with both AIH and PSC and...

Thanks for the responses, all. Clash--I think I will ask the doc how and to whom to address questions that I will no doubt have in the next few weeks, either via email or some other way. Getting in to another doc on a cancellation would be great, but unfortunately it is a three hour drive for...

And L's doctor had a baby on Saturday. Early. (But the baby is fine, thank goodness.) I called today and her nurse said there is evidence of colitis and liver disease (autoimmune hepatitis) in the biopsies but that the doctor will call me to discuss and prescribe medicine. Meanwhile, we can...

Just dropping in to say that I will not hear results until Monday at the earliest. I called to ask for results but the pathologist who was going to review the results with our doc was out until Monday. Crohnsinct--i don't totally understand what the different levels of med school are, but L's...

L is an extremely picky eater, so much that we wondered if her issues were from bad diet alone. When she was a baby she fell off the growth curve because she refused to eat. She weighed 15 lbs 7 oz at 18 months, but that is when i discovered she would eat french fries and fed them to her three...