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You know, I don't know if they have ever checked her levels to see if they are therapeutic. They check her liver enzymes to determine the success of aza in keeping her AIH in remission. I don't know if they are even thinking about it being therapeutic for the colitis (maybe particularly because...

Thanks, killcolitis! I may be looking into a second opinion simply because it seems like a good practice, but I figured I would give the Flagyl a go while keeping a sharp eye out for neuropathy symptoms. (My daughter is six, but I can't remember if that puts her in the veo or just early onset...

Now that I say that, I know it can't be right. California (Stanford) is the PSC place. Or maybe that isn't pediatric PSC. I'd better do more research. And maybe it is just numbers, not necessarily accumulated wisdom... Though presumably they often go together.

Yes, we go down to Denver. As I understand it, they are second only to children's of Philadelphia for pediatric PSC. I don't know about the IBD either, though. I guess I will look into a records review, maybe at chop.

Yikes! Thanks, mlp!

I have been wondering about a second opinion lately, but I am not sure where to go. Her liver issues make California the preferred place to go for a second opinion, but her liver is actually doing unusually well for now (and... We are in Wyoming and have three other young kids, which makes...

What is neuropathy,exactly?

My daughter, L, is still having mild continuing diarrhea, usually about twice a day. We are down to 2.5 mg of pred every other day, with azathioprine as a maintenance med. Her liver (AIH and PSC) has responded exceptionally well to this regimen, but her diarrhea is continuing at a low level...

The FC last time was seventy eight. The doc called this "slightly elevated". Her scopes were in June, and showed a clean esophagus and stomach (biopsies also OK) and first part of the small intestine. The lower scope was only a sigmoidoscopy, but showed visible ulceration in the colon. The...

So L is still having diarrhea. She has been on prednisone since July, now down to 5 mg, and also azathioprine, omeprazole, and Ursodiol (that's a PSC med). When i last mentioned to the docs she was still having diarrhea, they tested her FC and did a test for C Diff (which was neg) and then...

Thanks, QueenGothel! I did actually try to contact Dr cox through that website but never got a reply.; I should try again. Right now our hospital is hoping to take part in a oral Vancomycin study, which we may participate in (assuming it gets funded). Thanks for taking time to respond. I...

So I am pretty new here; my daughter (6) was recently diagnosed with some autoimmune liver diseases with a secondary IBD diagnosis. I first took her to the doc because of persistent diarrhea. Elevated alk phos can be a sign of liver disease (or bone disease, I think). You say her results are...

Thanks, Jmrogers, that is a good point about trends. So far we only have two cbcs to look at... So no trends, as I wouldn't recognize an out of place value between two choices. But I imagine if the doctor sees anything worrisome to her she will call. So far they seem good at getting in touch...

Ah! I didn't know that about steroids, and L is just finishing her taper off prednisone (only on 5 mg now, but was on 10 at the time of the blood draw). But we also live above 7000', so I imagine that is contributing. I guess I just looked at her high hemoglobin and hematocrit and thought...

So I got results from L's last blood work and I have a question. Almost everything was in normal range, except for the red blood count, which was slightly high (5.05, range 3.9-5.0) and then her MCHC was slightly low (33.1, range 33.5-36.0) and RDW was slightly low ( 11.7, range 12.8-14.8). I...

1. Diagnosis and date of diagnosis? Feel free to include other diseases besides IBD. Autoimmune hepatitis Primary sclerosing cholangitis PSC-related inflammatory bowel disease (type not yet specified) 2. Boy or girl? Year of birth? Girl, 2009 3. Location? Wyoming 4. What procedures has your...

This is amusing: I just listened to my voicemail again. The doctor has prescribed 149 mg of Flagyl the times daily. 2.97 ml. The nurse seriously left me a message saying to give 2.97 ml of Flagyl three times daily. She did say afterwards that 3 ml would be fine. 😂

I have been giving her Hershey's Kisses after each prednisone to cut the bitter taste. I guess we will see how palatable the liquid Flagyl is.

The doc prescribed liquid. I am not sure if the dosage just doesn't work with the dose the pills come in or what. I know she should be down for pills when possible. But I may wrap her prednisone tablets in fruit roll ups. That is a great idea!

Oh, boy, nasty-tasting medicine. More bribery to come. 😛 Thanks, though.