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I am so sorry to hear that your son has PSC (and maybe AIH). I don't know how much you have looked into online support, but there is a moderately active forum at livingwithpsc.org, and a really good Facebook group called PSC partners seeking a cure (there are both an open and closed group)...

Yay, my daughter appears to be in remission from AIH!!! *does a happy dance* Now to get a couple of years of azathioprine under her belt. Her PSC is currently not active, either. I am not sure about her IBD, though. The doc seems satisfied with her lack of overt symptoms, but I would...

S is always constipated and has been since he a couple months old. That never would have worried me at all before I started reading about pediatric IBD, because I am always constipated and feel perfectly happy that way. 😜. However, I have noticed that lately he not only has to work at his...

Oops! Double post.

I took S for his flu booster today and had his weight checked. He actually has lost weight (down two ounces since December). Our pediatrician have him a referral to the growth clinic in Denver, which I guess is the first step for underweight babies to get checked out. From there they will refer...

It is about two and a half hours one way for us. :P I am not concerned about school right now; L will miss an entire day no matter what. Also, since S is still nursing I can't really leave him all day long... Well... I could. But I think it would be hard on him and my husband. So for now it...

Okay. I am going to talk to the ped again when we schedule L's next appointment. I think they will try to get a referral so that S can be seen the same day as L to minimize our trips.

Nope.

I ought to add, he has also dropped percentiles in height. At his highest percentiles, he was fiftieth for both weight and height. Now he is tenth for height and way under the third percent line for weight (16 lbs, 10 oz at one year).

To be clear, he has not lost weight. He just is gaining very little. He is losing percentiles. I think I would rather he see a gastroenterologist, or anyway someone who will recognize possible digestive issues or growth issues. That is why I was asking about a nutritionist, because I wasn't...

Okay, that makes sense. When L was at this point we were working with an occupational therapist to try to get her to eat anything (that wasn't ice cream--ha!). But she wouldn't even put food in her mouth. Nothing had been ruled out at all yet. I am fearful of testing both because of what...

Our pediatrician wants to refer my youngest child (who turned 1 in Dec) to a nutritionist. He, in a pattern similar to L, has gone from chunky baby to way under the 3rd percentile curve for weight. I am still nursing him quite a bit, and he seems to like food but eats very little. He puts it...

My daughter has IBD (probably UC) and PSC. There is a moderately active PSC community at livingwithpsc.org. The majority of PSCers also have IBD, and I am sure you will find someone who can relate to your situation there. I am sorry you are struggling with this.

Hi! My daughter who is six is diagnosed with IBD (probably UC), autoimmune hepatitis, and primary sclerosing cholangitis (a slow-progressing disease of the bile ducts). I'm not sure I have any great wisdom to offer. I believe the usual course of treatment (and the one my daughter is on) is a...

Thanks, everyone!

L has been getting bad headaches lately, and they seem to be increasing in frequency. I suspect they may be side effects from her meds, but I am not sure, and there is a strong migranoid tendency on my family. I am planning on talking to the nurse about it today or tomorrow, buti am wondering...

I have no idea! I'm going to look into it now. I know there are some studies using Entyvio for PSC... But none of them are pediatric and I just don't know about the AIH.

I imagine there might be different therapeutic levels. Also, I wonder if they don't want to increase the aza because it can cause liver damage, and they don't want to ruin a good thing they have going with her liver. That's just supposition, though.

I'll ask about a levels check at our next appointment.

She has been on the aza for over six months now.