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  1. GirlwiththeCurl

    Iron question

    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...
  2. GirlwiththeCurl

    L update

    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...
  3. GirlwiththeCurl

    Ankylosed baby tooth

    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...
  4. GirlwiththeCurl

    L update--trialling off flagyl.

    So after all my concern that L hasn't really ever been totally well, despite clean bloodwork, things seemed to settle down and I sternly told myself that I was going to stop blowing things out of proportion. At her last appointment the doc was very pleased with her weight and growth. I was...
  5. GirlwiththeCurl

    L update and question

    Hi, All! It's been a while since I've posted, but I kind of hang around reading posts. Even though I don't post often, I feel like I get a lot of good advice. :) Overall L is doing okay. Her bloods are good, though her LFTs are rising just a bit (not unexpected with PSC). She eats enough to...
  6. GirlwiththeCurl

    Question about 'solid' stool

    I've been a little unhappy with L's eating and bowel movements lately. She's hungry all the time, but eating makes her feel a little sick (not so sick as to miss school). Every couple or three weeks she has diarrhea for a couple of days. About half of the rest of the time, her​ stool appears...
  7. GirlwiththeCurl

    Strange stomach pain

    L (7) has had some strange stomach pain lately, and I was wondering if this sounds like anything of note to any of you. What happens starts in late afternoon or evening. She says her stomach doesn't feel well, but it's mild. She decides not to eat dinner or eats only a few bites. Around bedtime...
  8. GirlwiththeCurl

    S Update

    Everything went very smoothly for S over the weekend. His upper GI scope was perfect visually. We're waiting on biopsy results, but the doc doesn't expect to find anything abnormal from them. The doc sort of shrugged and said they get a certain number of kids that stop eating and they never do...
  9. GirlwiththeCurl

    CRP question

    I picked up all S's bloodwork results in preparation for taking him to see the GI Monday, and found that the results were not as normal as the PED led me to believe. I don't have a good feeling for how far out of normal some of the things are, particularly the CRP. His came in high at 4.7, with...
  10. GirlwiththeCurl

    Anal skin tags

    Have any of you dealt with anal skin tags? My son S (the underweight one that I'm taking to see L's GI next Monday) has had something that looks like a skin tag since he was born. Here's why I'm asking: his tag isn't on the surface of his anus. It is sometimes visible (often after a bowel...
  11. GirlwiththeCurl

    L update and worries about son

    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...
  12. GirlwiththeCurl

    Hair loss

    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...
  13. GirlwiththeCurl

    Skin rash

    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...
  14. GirlwiththeCurl

    remission!!!

    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...
  15. GirlwiththeCurl

    Can you tell me what a nutritionist does?

    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...
  16. GirlwiththeCurl

    Which doc do I call?

    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...
  17. GirlwiththeCurl

    Flagyl indefinitely? Update on L.

    My daughter, L, is still having mild continuing diarrhea, usually about twice a day. We are down to 2.5 mg of pred every other day, with azathioprine as a maintenance med. Her liver (AIH and PSC) has responded exceptionally well to this regimen, but her diarrhea is continuing at a low level...
  18. GirlwiththeCurl

    How normal should I expect bowel movements to be?

    So L is still having diarrhea. She has been on prednisone since July, now down to 5 mg, and also azathioprine, omeprazole, and Ursodiol (that's a PSC med). When i last mentioned to the docs she was still having diarrhea, they tested her FC and did a test for C Diff (which was neg) and then...
  19. GirlwiththeCurl

    People who understand blood test results... Unlike me.

    So I got results from L's last blood work and I have a question. Almost everything was in normal range, except for the red blood count, which was slightly high (5.05, range 3.9-5.0) and then her MCHC was slightly low (33.1, range 33.5-36.0) and RDW was slightly low ( 11.7, range 12.8-14.8). I...
  20. GirlwiththeCurl

    Fecal calprotectin

    I feel a little funny posting here, because my daughter's symptoms are so mild, and we have only just gotten our diagnosis, and the liver problems seem to be what the doctors have keyed in on. Also, I have not been supporting others, with the feeling that everyone else is so much more...
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