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  1. AZMOM

    Total Iron Binding Capacity?

    Alright oracle friends on the forum. :-) Claire's last labs showed mild anemia - we've been waaaaaay worse. First set of some of these I've seen. GI ordered them when choosing her EN formula. What can you tell me about the TIBC? Do I care? (of course I care but you know what I mean!)...
  2. AZMOM

    Sores on bottom?

    At diagnosis, Claire had quite a few sores on her little hiney. They weren't full blown boils, she's only had one of those ever and it was when she was 3. But they were more significant and more painful than a simple pimple or something. We treated them with antibiotic ointment in the...
  3. AZMOM

    Long time no see

    Well, I've been gone for a long time. Every once in awhile we all need breathing room. :ybatty: I just wanted to say I've taken great comfort and that blessed feeling of "we are not alone" when I've been on the forum tonight. That is why we all need to be here. As for my peanut, things...
  4. AZMOM

    Uceris

    Anybody try Uceris yet? It's Entocort in a new 9mg formulation. My understanding from Claire's GI is that it releases the steroid across the colon for more coverage. We started about a week ago and *crosses fingers* I think Claire is feeling just a little better! Thought I'd share.....worth...
  5. AZMOM

    MRE vs Scope results??

    Have any of you had experience with an MRE and colonscopy performed closely together? Were the results consistent? Claire's MRE showed nothing. But she's had the WORST weekend she's had in a long time. My parents are concerned. We're concerned. She's complaining almost CONSTANTLY and it's...
  6. AZMOM

    Less than ecstatic

    I have far less to deal with than so many of you that I hate to complain. So........I'll just whine I guess. Called Rheumatology because Claire is nearly refusing to use her right hand, crying etc. The consensus between the GI and the Rheumatologist is that since all her numbers are good...
  7. AZMOM

    Random food question

    Have any of your children developed food allergies POST diagnosis? After another afternoon of vomiting yesterday, Im pretty confident Claires allergic to shellfish. J.
  8. AZMOM

    Inflammation anyone?

    Well the "healthy" child that I worry about has a new dx. Just thought I'd share so we've confirmed by second scope/biopsy that Hunter has eosinophilic esophagitis. Often referred to as EoE. Heres a website if youre interested and worth checking if you get to worrying about "healthy" siblings...
  9. AZMOM

    Fecal Calprotectin Question

    Alright question for those of you whose docs order the FC like mine does When I asked Claire's doc if the numbers were indicative of severity of disease activity, he said "not really" that he just looks for "normal" or "abnormal" and explained that it just shows the presence of inflammatory...
  10. AZMOM

    She's a machine....

    Okay, this isn't a "funny" thread but I still find my own tough little cookie amusing. :heart: Last night, she decided she'd had enough of my methotrexate injections. So now, at the ripe old age of 8, she officially does her own shots. I guess it makes sense since she's administering her own...
  11. AZMOM

    Zip a dee doo dah

    Okay I don't sing but you get the idea. I just emailed Claire's doc to tell him she is SO MUCH BETTER. At least six days have passed without a complaint. Stools are good. She's running around like a maniac doing cartwheels in the yard. Is it the enema? Is it the increased Balasalazide? I don't...
  12. AZMOM

    Rowasa?

    Okay this is only the second night of Rowasa and I have questions. Last night she took it better than I expected and retained it fine. My heart breaks that I've told her she can do "anything" so many tImes that she believes me..... I talked her out of going to the bathroom and squeezing it all...
  13. AZMOM

    Bruises?

    Well the latest from out household is that Claire is having FREAKY bruising on her back. I've called the GI and he's ordered labs. We see him next week. Anyone else's kiddo bruise like that? I may try to post a picture so you all can see. I'm worried! J
  14. AZMOM

    Riddle me this.....

    Labs look good. Overall Claire is pretty good. But the damn blood is in the toilet every day right now. Anybody else have daily bleeding when everything else looks good?
  15. AZMOM

    Groundhog day?

    Well here we are....Hunter and me....holed up in the same hotel (same floor even) that I stayed with Claire for her scope back in April. Sort of like Bill Murray in Groundhog day where he does the same thing over and over. I'm out of kids after this one though. Those of you I don't know...
  16. AZMOM

    Mouth sores???

    mouth sores??? Ok so Claire is doing well on her pred taper. But tonight she was complaining about her gums hurting. She has multiple tiny little sores - almost look like holes. Totally different from the big honking aphthous ulcers from the days of yore.... Thoughts? J.
  17. AZMOM

    Infinite Rollercoaster

    Hi Forum Friends - I've been reading and keeping up with everyone but a terrible poster lately. For those of you that "know" us, here's the latest. * finally met our new neurologist since the relocation. LOVED her. She increased Claires Neurontin a bit and her feet are pain free for probably...
  18. AZMOM

    New pain question

    Okay, off steroids x 1week. Booyah! That's the good news. However, Claire has been having a lot of reflux. She announces periodically, 'I just threw up in my mouth." Ewwwwwww - poor baby. Anyway, the BMs are good. The labs are creeping the wrong direction but still no panic on that front...
  19. AZMOM

    Strange conversations

    I know I get "slap happy" late at night on this thread. But here's some things I heard at my house tonight that I never thought I would have conversations about. Claire yells from the bathroom, "Moooooom, I'm pooping." Me, "Okay, let me go get the the flashlight." Claire, "It's light brown...
  20. AZMOM

    Hi and an update

    Hi friends - we are at the beach and having a wonderful time. I'll say this - if you gotta have a kid manic on prednisone - do it at the beach! My good news from last week's Hematology visit is that Claires bone marrow is again producing. Hemoglobin up to 9.8 (full point from week before) and...
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