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Thanks, David--this is great advice. She has been on azathioprine for 15 months and was tested back in November to make sure it was in the therapeutic range. It was, but on the low end. I'll check with the doctor about that today. I'm getting some magnesium. She has a follow-up appointment...

It is weird, isn't it. Apparently the steroids via IV at the hospital were working OK but weren't reducing inflammation enough in her colon (or not as fast). They tried the steroids via enema and that seemed to work very well in that localized area (she was still on the IV steroids) and so they...

thanks for the idea Catherine! I just suggested it and she looked at me like I had lost my mind, but then the wheels started turning. I think she might go for that, or at least try it. I'll let her mull it over today at school and bring it up again this afternoon. Thank you!

Poor kid is NOT happy about the enemas. I've called the doc to see if we can come up with some other kind of med as the sobbing starts about an hour before it's time for the enema and I can't take much more of this. Sigh. (of course I will take much much more than this, but I so wish neither of...

She has 3-4 bms a day and acid reflux. She also has very low iron levels so looks like death warmed over. She gets iron infusions to help with this. She does live a normal life--horse riding, theater, babysitting--but I have noticed other kids using the bathroom quite so much ;). I can't...

Upsetmom, I so hope you're right! Hang in there!

Thanks, Michelle. One of my good friends is a yoga instructor so I think I might talk to her about your idea. And thanks for the other tips too--we've started keeping a food diary (although she has such a limited diet that it seems almost funny given that we just list the same things over and...

Update: She's coming home from the hospital later tonight! Hooray! The IV steroids seemed to help but the biggest impact was from steroids via enema, which I now have to give every day for two weeks. Hmmmmm. The poor kid was sick of endless needless and pokings/proddings in her nether regions...

Thanks so much for the advice. I love the studies, too; my doc seemed to be more interested in listening to me when I showed her the study this morning. It's not that she doesn't listen, I suppose--they're busy (especially as she's the only one on call over spring break apparently). so I have to...

Hi everyone, Thanks for the support. The scans and scopes showed NO strictures or abscesses so no surgery needed!!! I've spoken with the doc about peptamen and the steroids via IV seem to be helping. What a ride--not interested in doing it again but know this is life now. Thanks so very much.

Still waiting to get in for the scopes and a CAT scan. Things are moving slowly around here. Thanks for asking though!

I am totally getting my hands on pepatem or peptide! Thank you!

Thanks for those ideas. She's on azathioprine (immune suppressant) and omeprazole and now steroids. The doctor just came in and said no food/drink tonight as they might have to do an endoscropy in the morning to see what's going on. She's thrown up 3 times today and pooped 3 times today--yet...

I'm new to the forum and sitting in the hospital next to my 13 year old daughter as I write this. She seemed fine until she turned 10 and then she just stopped growing. For two years I went from doctor to doctor trying to get them to test her for something--anything--because this wasn't normal...