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  1. cassimw

    504 plan?

    Glad to hear it!
  2. cassimw

    Remicade - doctor wants to decrease dosage - is this a thing?!

    Ohhh! Thanks for breaking that down for me. That makes a lot of sense. Wish the doc would have explained it that way. That's the thing about this doc - I don't doubt that she knows a lot, she just isn't good at communicating her rationale for things. Be that as it may, I'm just glad she was...
  3. cassimw

    Remicade - doctor wants to decrease dosage - is this a thing?!

    Update: So here's what happened at the appointment. The doctor reviewed results of scopes/biopsies (all good) and said that since my daughter has been in remission for at least a couple of years, she recommends lowering the dosage and possibly getting off Remicade at some point (I'm unclear if...
  4. cassimw

    Remicade - doctor wants to decrease dosage - is this a thing?!

    lol! Can I just say how much comfort that last statement gave me? I was like: Hell yeah - I've got the Crohn's forum moms on my side! I've got back up! ;-)
  5. cassimw

    Remicade - doctor wants to decrease dosage - is this a thing?!

    Thanks for responding and thanks for tagging the others ;-)
  6. cassimw

    Remicade - doctor wants to decrease dosage - is this a thing?!

    That’s my thinking too. She’s on 400mg every 8 weeks per the infusion center. I thing that’s 10mg? Maybe they could notch it down a bit? But I’ve just never heard of this and since they only check her levels like twice a year due to insurance, we won’t even know it that’s going to keep her...
  7. cassimw

    504 plan?

    This particular resource was created by the Parent Advisory Council of ImproveCareNow (a collaborative community where patients, parents, clinicians, and researchers work together to improve the health and care of children and youth): Accommodations Toolkit - the goal is to help you better...
  8. cassimw

    Remicade - doctor wants to decrease dosage - is this a thing?!

    Remicade question - decreasing dose?: My daughter has been on Remicade for Crohn's for 5 years has been doing well. Recently her GI left the practice and we started seeing a new GI there. After my daughter's scopes last week, the GI said she wanted to talk with us at the follow up appointment...
  9. cassimw

    Power of Attorney Form

    Hi everyone, It's been a while since I've posted. My daughter just turned 18 :ywow: I'm thinking about her going off to college in a few short months... One thing I know that I need to get ASAP is a Power of Attorney. Have any of you done this yet? There are a few forms online that I...
  10. cassimw

    Humira after allergic reaction to Remicade

    I help run a parent of kids with IBD support group in Northern VA, and this post is actually for a friend in the group. Her son is 11 and was diagnosed at a young age. He was mostly asymptomatic for about 5 years, and then had a terrible flare that sent him to the hospital and led them to...
  11. cassimw

    Low hemoglobin but iron levels fine - iron pills not helping

    Hi everyone - happy to say I haven't been to this forum for a while, but I'm back in search of your collective knowledge! So my daughter has been "slightly anemic" for quite some time. They say her hemoglobin is low, but her iron levels are okay. She's tried iron supplement, but it doesn't do...
  12. cassimw

    Surgery update

    Everyone, I posted about a month ago asking for suggestions on what to take with us to the hospital when my daughter had her surgery and some of those suggestions were priceless -thank you! I just wanted to post an update to give some encouragement to those whose kids might have to have a...
  13. cassimw

    Surgery - suggestions for hospital stay?

    Hi everyone, My 16 year old is going to have surgery in 2 weeks (illeocecectomy - not sure if I spelled that right). It's elective, because right now she is "well". We are gearing up for an anticipated 1 week stay at the hospital. We've been very fortunate not to have gone through any...
  14. cassimw

    Breeza for MRE prep

    I heard from a parent at a local support group that her daughter drank Breeza as a prep for an MRE and that it tastes much better than the usual Barium. I only know of one facility locally that is offering this method (though there could be others?). Anyone have experience with this? Just...
  15. cassimw

    Swollen Gland?

    I realize that a swollen gland can mean lots of common and innocuous things, especially in a person who is immunosuppressed, but... My 15 year old has been on a combo of Remicade + 6mp and has had a swollen gland on the left side of her neck for about a week. We took her to the pediatrician...
  16. cassimw

    MRE results after 4 Remicade doses - what should I think of this?

    Hi everyone, My 15 y.o. daughter just had a repeat MRE after having had 4 Remicade doses (5th is tomorrow). She is also on 6-MP and partial EN diet. She had an intestinal fistula, which seems to have either resolved or has significantly reduced in size (they can see a shadow but aren't sure...
  17. cassimw

    Poll: How long have you been on Remicade?

    I just read a post by someone who has been on it for 10 years! My daughter has only had 4 infusions. I'm interested to hear from folks who have been on it for a long time and what that's been like. If you eventually stopped taking it, I'm curious to know why and how that's gone?
  18. cassimw

    23andme - genetics & I

    https://www.23andme.com/ibd/ http://www.crohnsforum.com/showthread.php?t=67893
  19. cassimw

    Book suggestions for crohn's?

    Looking for book suggestions that my recently diagnosed teen (15) can read. Nothing too technical, but something with some good info. Only 19 titles at our very large county library, and most are diet books.
  20. cassimw

    Need DD to drink/eat today (post vomit)

    PAW (referring to my daughter by her initials), my (almost) 15 year old daughter, overdid it on food yesterday. She's been mostly on Ensure. But yesterday, she had 1 Ensure, and the rest of her calories were food - and not the healthiest, I might add. This is the 3rd time she's vomited since...
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