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Thanks, everyone. Yes, her vitamin b12 levels were normal according to the nurse. I don't think they tested MMA. I'm still in the process of getting the actual results, so I can see what the lab's low and high values are and where L's stuff falls.

I've got a question about iron levels. L has been having a lot of trouble with memory and concentration in school (she has ADHD, but this seems more than usual), and I asked her pediatrician for vitamin levels, especially since she's been on omeprazole for a few years and it cause various...

Here's the article I saw, but the study is specific to PSC-UC patients. https://doi.org/10.1093/ibd/izz027

I'm interested to see this pop up. I've seen at least one article saying it was effective in maintaining remission in UC ped patients, I believe, but they may have also had PSC (article was posted on a liver group I follow). I've asked my daughter's doc about OV a couple of times and she will...

Well, L did great (other than letting every single doctor and nurse know that she was HUNGRY). Everything was visually normal except for some very mild-looking antral gastritis, which the GI (not L's usual doc) said wasn't terribly uncommon but biopsies would give us a fuller picture. Results in...

MLP-- yes, I agree, and yet the things I see are subtle and I don't really blame the doctor for assuming the best. I also can see how anxious I've been since her diagnosis,and yet L is growing (slowly) and, as far as I can tell, able to participate in all the things her peers are doing. As long...

Maya--I was bemused about putting her under anesthesia and not just doing a colonoscopy also, but her GI is pretty strict about not ordering stuff there isn't a clear and present indication for. Even with her eating habits and nausea she waited six months to see if a course of omeprazole would...

Hi! L is doing okay. She's actually having an upper gi scope next week (continuing restrictive eating, nausea when she eats more than just a little, diffuse abdominal pain--but these issues are either fairly mild or she's learned to live around them because she basically is cheerful and...

Your symptoms sound a lot like Behcets disease, which can mimic inflammatory bowel disease. Mouth sores, genital sores, and rashes are all symptoms of Behcets. Of course it might not be that at all, but maybe it's worth looking into.

My daughter has IBD, PSC, and autoimmune hepatitis. If you want to find some reliable information about it, search PSC Partners Seeking a Cure. The disease course is EXTREMELY variable, so you can't know what will happen when if you do end up with that diagnosis. (My daughter was diagnosed over...

ALSO--I am NOT saying your son has these diseases, but given his numbers I think you should be finding out what is going on. A pediatric hepatologist might be a better bet than a general GI.

MRCPs are also used for imaging the bile ducts within the liver. PSC has both large duct and small duct types. An MRCP can show stricturing in the large bile ducts, but small duct PSC is diagnosed by biopsy.

Hi! Those are not insignificant numbers for his liver function tests! Has your son had a liver biopsy? Some liver diseases, particularly in their early stages, may not be caught except by biopsy. My daughter's liver diseases (autoimmune hepatitis and primary sclerosing cholangitis) were only...

Whipple's disease? Intestinal lymphangiectasia (I mention this because it also causes protein loss, though maybe that's not a concern for your son anymore)? Dancemom is on here; her daughter has IL. I'm actually not sure if these cause bleeding, though I believe both may cause blunt villi...

Her doc was ready to scope if we added the omeprazole and she was still having pain, and she's really not now. In general, I think her doc has seemed slow to be concerned about L's off and on, low-level gut issues. I spent some time pretty frustrated with having her point out L's good lab...

Quick update: L's liver enzymes were normal at her second draw. Yay! Probably just a blip. Also, since starting omeprazole, her stomach pain after eating has totally stopped. She's still not eating a lot, but she's not leaving the table doubled up with stomach pain. Yay, again! Only now doc...

Thanks, MLP and Maya. I'll mention it, I think, but I feel reassured that this is probably a separate issue altogether. :)

I guess this is really a question for those of you whose kids deal with AS. We found out at the dentist that L has an ankylosed baby tooth. The dentist was very offhand about it, but after I looked it up I was concerned (it can lead to impaction of the permanent tooth or even bone loss and...

Maya--L is not afraid to tell grown ups what she thinks. It's a great quality some of the time. LOL They do the liver biopsy while she's under anesthesia. The hard part is that she has to lie on her right side for 4-6 hours afterwards to reduce the likelihood of bleeding and they do blood draws...

L had her appointment last week and it was fairly productive. Her doc was aware this time that her inflammatory markers have never been raised. Because L's fcal was normal in July she wants her to try omeprazole for two weeks and see if it reduces her pain after eating. If nothing changes we're...