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We just started Miralax, but we haven't seen results yet. I think using the suppositories got him pretty cleared out (as the x-ray suggests) so I was hoping we would already see results. But he still hasn't had a bowel movement since Monday. Thyroid results are normal (which is what I...

I can't figure out how to attach pictures of S's growth charts. Of course, I'm trying to do it from my phone. :P

I tried pediasure six months ago and he wouldn't drink more than one swallow. But I should try again. He doesn't like chocolate milk or Carnation instant Breakfast, so I'm not too hopeful. Oh. Also, his appointment isn't until March 9. Sigh. I've wondered about just calling L's nurse and...

Thanks. If I recall, the feeding clinic can somehow view the upper esophagus, but I don't know what else they will do. S is not terribly picky. He eats only a small amount of whatever is offered and then refuses to eat more. This is even true with ice cream and desserts.

Hi, all. L is still doing well. Her liver labs are still good and her IBD is staying quiet. She's had good liver numbers for 18 months now. Her doc originally mentioned trying to come off the aza after two years of normal liver labs, so I'll be asking if that is still expected when we have her...

You may find some help on this forum, but there is also a Facebook group (PSC Partners Seeking a Cure) where you would probably get some people who have had colostomy surgery after liver transplant. I don't know why you were transplanted, but PSC is a liver disease with a high coincidence of...

Ranchmom--thanks! Our ped actually recommended increasing her dose of Concerta, because she has seen in some kids that if they aren't getting quite enough they tend to get anxious and fidgety. So we are trying the next step up (starting tomorrow, in fact). We should be able to tell in a...

I think her bald spot is too far back to be covered by a head band, but I'll keep my eyes open for some really wide cloth ones. I've been putting her hair back in a pony tail, partly to cover the spot and partly to keep her from pulling at her hair.

Thanks, my little penguin. I think I'm going to wait for the blood work results, but if they are normal I'll ask for a derm referral right away.

The pediatrician did if the bald spot grows bigger they will refer her to a dermatologist. :/. While bald spots are not the end of the world, I am not excited about navigating the social consequences of bald spots on a seven year old girl in school.

Quick update: L's GI says she doubts hair loss is occurring as a side effect from azathioprine, since she's been on it so long already with no hair issues. However, she ordered bloodwork to test azathioprine levels and also for zinc deficiency. I consulted Dr Google which suggested scalp...

Thanks, everyone. I'll check on the biotin. Even though I haven't seen L pulling her hair for a few days now (since stopping the Concerta) her bald/very sparsely covered spot is getting bigger. Bah humbug. The Concerta was making a difference at school, too. I might see if I can get her a...

Hi! So L has been on azathioprine for about fifteen months now. Over the summer she was diagnosed with ADHD and started on Concerta, with approval from her GI/Hep. At her appointment we pointed out that L's hair was falling out easily, and they ran bloodwork to check for thyroid issues, which...

Oops, duplicate.

Hi! Sorry to hear your diagnoses. My daughter was diagnosed with IBD, PSC, and autoimmune hepatitis last year. This forum is very knowledgeable for IBD issues. I don't know what you have found about PSC, but pscpartners.org is a good resource, and there is a Facebook group called PSC...

I don't know how long Epstein Barr virus might affect liver enzyme levels, but if repeat bloodwork shows continuing elevated liver levels you might ask for a referral to a hepatologist. My daughter has indeterminate colitis (almost certainly ulcerative colitis, but biopsies were inconclusive)...

Thanks, mlp and CIC! Evidently the school nurse slapped some benadryl cream under her arms today and the spots there have all but disappeared. Behind her knees are still a mess, though (though I put some benadryl cream on them after talking to the nurse). So... An allergic reaction or...

L has developed an itchy skin rash in her armpits and behind her knees. I was assuming eczema (though she has never had it before) but it has not cleared up with a mild steroid cream and actually doesn't look all that much like the eczema I or her sister get. She has pretty distinct...

I should add that my daughter's IBD is almost certainly secondary to her PSC, and that almost all PSCers have ulcerative colitis rather than Crohns. The docs weren't able to determine for sure which she had from her biopsies, but we are pretty much operating under the assumption for now that...

Hi! I'm sorry to hear about your daughter's diagnosis. I'm pretty much a novice at this, but my daughter also has AIH as well as indeterminate colitis (and also PSC, a disease of the bile ducts). Am I right in thinking that you must continue the 6mp for the AIH whether you start the...