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  1. GirlwiththeCurl

    5yo Son Diagnosed 1/20/21

    Oh, and we gave her lots of encouragement before the dose and praise afterwards.
  2. GirlwiththeCurl

    5yo Son Diagnosed 1/20/21

    My daughter was diagnosed at 6 and ended up on long-term Flagyl (metronidazole). It was rough for a long time getting her to take it. These are some of the things that were successful for us. We set out the medicine with milk to drink after (it cuts the taste better than water). We also set out...
  3. GirlwiththeCurl

    Son, newly diagnosed

    Oh goodness, your poor son! I promise there will be lots of parents along soon with tons of good advice (my ibd daughter has sort of jogged along being mostly well, so I don't have all the experience of the others). Hang in there!
  4. GirlwiththeCurl

    Bloating and Stool Color

    I think Cic probably has a lot more good advice about ibd and it's quirks than I do. :) Liver disease can be associated with ibd but it's not so very common. Here are things to look for in addition to gray or white stools that point to the liver: itching with no associated rash, yellowing of...
  5. GirlwiththeCurl

    Bloating and Stool Color

    I second concerns about the bile ducts/liver with the gray stool.
  6. GirlwiththeCurl

    Iron question

    Hi, all, Late update, but when I did finally get the numbers, L's ferritin was 16, so actually not out of range according to their posted normal range, but certainly on the very low end of normal. Her serum iron was 140, which was notably high. Odd, but okay. (And her B12 was almost 700.) We...
  7. GirlwiththeCurl

    Iron question

    Thanks, everyone. Yes, her vitamin b12 levels were normal according to the nurse. I don't think they tested MMA. I'm still in the process of getting the actual results, so I can see what the lab's low and high values are and where L's stuff falls.
  8. 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...
  9. GirlwiththeCurl

    Oral Vancomycin study

    Here's the article I saw, but the study is specific to PSC-UC patients. https://doi.org/10.1093/ibd/izz027
  10. GirlwiththeCurl

    Oral Vancomycin study

    I'm interested to see this pop up. I've seen at least one article saying it was effective in maintaining remission in UC ped patients, I believe, but they may have also had PSC (article was posted on a liver group I follow). I've asked my daughter's doc about OV a couple of times and she will...
  11. 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...
  12. 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...
  13. 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...
  14. 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...
  15. 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...
  16. 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...
  17. 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...
  18. 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...
  19. 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...
  20. 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...
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